Scott Benner 1/18/24 Scott Benner 1/18/24

#1110 Big Brothers and Sisters

Today we welcome Trisha from Jewish Big Brothers Big Sisters of Greater Boston. Learn more - (781) 516-2090) or JBBBS.org

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

Scott Benner 0:00
Hello friends, welcome to episode 1110 of the Juicebox Podcast.

On today's show I'll be speaking with Trisha from Jewish Big Brothers Big Sisters. They have a great program that's trying to help children with type one diabetes, and she's here to tell you more about it, check them out@jbbbs.org Or if you're interested in donating your time 781-516-2090 Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout. That's juice box at checkout to save 40% at cozy earth.com. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones, it doesn't matter to me. Today's episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at contour next one.com/juice box. This episode of The Juicebox Podcast is sponsored by ag one drink ag one.com/juice box. When you use my link and place your first order, you're gonna get a welcome kit, a year supply of vitamin D and five free travel packs. Hi

Tricia 2:05
there. My name is Tricia and I'm coming from Jewish Big Brothers Big Sisters of Greater Boston. We're a mentorship agency, and we've started a type one diabetes program. I'm the clinical director there. And it's just been incredible to see children with type one diabetes, getting a mentorship opportunity through an adult with also type one.

Scott Benner 2:25
For sure. You're the Clinical Director, what's your background? What's your education?

Tricia 2:30
So my background is I Am a Child Life Specialist. I'm certified, then I worked in a hospital for close to 20 years with children with chronic illnesses. And from there I went on to get an MBA and healthcare policy.

Scott Benner 2:43
Okay, Tricia, you're doing a thing right now that we, in my house call the gas station voice. You don't know what that means yet, but I'll explain it to you. Okay. Okay, you and I spoke for a few minutes before we started to record. And you have a little bit of a deeper voice which came through very nicely on the microphone. When my wife goes to the gas station. She is never as nice in her life as she is to the person who pumps her gas for her. And she goes up a couple of octaves to show people how kind she is. We don't know the psychology behind it. We just call it Kelly's gas station voice. Anyway, when I asked you to introduce yourself, you went into your gas station voice. Okay, by the way, this is all staying in. So don't be embarrassed. We're just talking. But you went from like this kind of like resonant voice to like, Hi, I'm Trisha. And I was like, Oh, that was interesting. And the mics not picking it up as well as when you just talk normally? Oh, no.

Tricia 3:36
Okay. All right. Be yourself back to my other voice. Be

Scott Benner 3:39
yourself. You don't have to be nice or anything. Don't worry. They just want to talk to you. Do you know you do that?

Tricia 3:46
No, no, I didn't. My

Scott Benner 3:49
wife says she doesn't know either. But she turns into Mary Poppins at a gas station. Oh, goodness, it's been it's

Tricia 3:54
been around here. We don't have anyone pumping our gas. So I've never been mentioned there. But all right.

Scott Benner 4:00
When I moved to New Jersey, I was like, I got out of my car the first time and the guy's like, hey, hey, hey, we pump the gas here. And I was like, I'm from Philly, I pump my own gas. Like, I don't know what you're talking about. And he goes into law. And I was like, It's my car. I'm gonna pump my own gas. And I still do it in Jersey, like I'll pull up and just get out and do it. But apparently they say it creates jobs. That's great. I'm for creating jobs. Anyway, you can just be like, just relax. Okay, relax. And, and I'm going to pick you through it. So you're from the Jewish Big Brothers Big Sisters of Boston. Is that the name? Yeah. Okay, of Greater Boston, Greater Boston. And you guys, is this a newer programmers? It's something you've been doing for a while.

Tricia 4:39
So it's a brand new? Well, it's been around. We've been around for a year right now doing this program, per se. Our organization's been around for over 100 years. Wow. So we're getting it off the ground and we're having a lot of traction. It's just been really fun to see the growth

Scott Benner 4:54
of it. Very nice. And how long have you worked there?

Tricia 4:58
I've been there for a little bit. For over a year, okay,

Scott Benner 5:01
and tell me again, your your background, your something, education, I'm sorry.

Tricia 5:05
So my background is I'm a child life specialist, I worked in a inner city hospital with children with chronic illnesses for close to 20 years. And from there, I went on and got an MBA in healthcare policy. How do you get into that originally, you know, it's a long story. But it started when I was a child with a family friend whose daughter had a brain tumor. And I spent a lot of time in the hospital with her to see the child life, people coming in and out and working with her and thought, This is what I want to do. So I knew from a very young age where I wanted to go in life. And then now it's just morphed over the years into how I've taken that.

Scott Benner 5:45
Describe the job in hospital a little bit. What did you do there? Sure,

Tricia 5:49
travel specialists work with children that come in. So either they come in through emergency surgery, they're sick, whatever it may be, and we help children understand what's going on with them at the moment. So helping them not just the child, but the child comes with a family. So helping the child and family from the beginning to the end of their hospitalization, if they need tutoring in hospital, if they're having a hard time taking medication, if they don't understand their diagnosis, if they need help around procedural support, if family needs help around procedural support, kind of life, people are there to teach kids about what's going on at that very moment and break it down to them. So it's developmentally appropriate.

Scott Benner 6:34
So ironically, you're almost like a big sister in that situation. Like a, like the, you know, the person in the family who's level headed in the moment and can be helpful. You got it? Yeah. Oh, that's interesting. Okay, so you go back, you get an MBA, that's sounds heady. I

Tricia 6:51
went, I know, well, you know, because then the management shift changed a little bit. And I ended up managing the program in the hospital. And I had an incredible supervisor who was a mentor to me, okay. And she really pushed me to, to reach my fullest potential. And we talked about, like, higher ed, she knew I wanted a master's. And we talked about what the next steps were. And she really helped me to understand how an MBA would be helpful to me as I went forward in life, it's

Scott Benner 7:23
really something when you meet somebody, in a work scenario that's actually interested in helping you get better, or rise, you know, in the organization, because that doesn't always happen. You don't always find a mentor, sometimes you find people were just happy to, you know, keep their foot on your throat, so you can't move up and get past them. And that it's a real thing. And it holds people back. So it's wonderful. When you see somebody doing the kind of the right thing in that situation. Is there something that happened during that time at the hospital that got you focused on type one or? No, right? Like you just, um, how did you make it to the the other?

Tricia 8:02
How did I make it here now? Yeah. So no, I didn't. I mean, I worked with children with diabetes in the hospital, but never specifically, that was my full population. My real population that I focused on, there were children with sickle cell disease, and helping them transition from pediatric care to adult care, which was a big thing, because when you're a child with a chronic illness, the pediatric world is very different. The adult world is, so after I had taken the break from the hospital had done a few other things in my wheelhouse. I found this job and I thought, oh my goodness, how perfect is it to take children with a chronic illness, adults with a chronic illness, and find the best pieces of both of them and bring them together to help each other where they're at. And as much as we say, we call our volunteers, our big sisters or big brothers. As much as we say, our bigs are the mentors. They get so much from the kids, our littles, That's unreal. And so it becomes kind of this two way street,

Scott Benner 9:11
have that experience with what I do. And I try to explain it to people. And I'm sure they can, like picture it. But until you're doing it, you have no idea how like, choosing work that helps other people enriches you. And I usually say that this podcast helps me more than it helps the people listening. They just, they would have no way to know that you know, but it's true. It's changed my my whole world. So I take that point. Incredibly, so you so when you get there, they're not hiring you to like set up, like a type one program. You just sort of happen to come in around the time that the program starts.

Tricia 9:49
Nope. Yeah, I was actually hired to set up the type one program from the beginning. Yeah, okay.

Scott Benner 9:54
Okay. So you were and so they had this idea. We're going to do this thing. And they they go out to get you. So now I'm super interested about what that process is like, how do you on day one sit at a desk and start thinking about this? And you know, what were your goals in the beginning and what did you learn? Along the way. I partnered with ag one because I needed a daily foundational nutritional supplement that supported my whole body health. I continue to drink 81 every day because it works for me. Ag one is my foundational nutritional supplement. It gives me comprehensive nutrition, and it supports my whole body health. Drink, ag one.com/juice box, when you use my link to place your first order, here's what you're gonna get a free welcome kit that includes a shaker scoop and canister, five free travel packs, a free year supply of vitamin D, and of course, your ag one. So if you want to take ownership of your health, it starts with ag one, try ag one and get a free one year supply of vitamin D and five free ag one travel packs with your first purchase. Go to drink ag one.com/juice box, that's drink ag one.com/juice box, check it out. Contour next.com/juicebox. That's the link you'll use. To find out more about the contour next gen blood glucose meter, when you get there, there's a little bit at the top, you can click right on blood glucose monitoring, I'll do it with you go to meters, click on any of the meters, I'll click on the Next Gen and you're going to get more information. It's easy to use and highly accurate. smartlight provides a simple understanding of your blood glucose levels. And of course, with Second Chance sampling technology, you can save money with fewer wasted test strips. As if all that wasn't enough, the contour. Next Gen also has a compatible app for an easy way to share and see your blood glucose results. Contour next one.com/juicebox. And if you scroll down at that link, you're gonna see things like a Buy Now button, you could register your meter after you purchase it, or what is this download a coupon? Oh, receive a free Contour Next One blood glucose meter, do tell contour next one.com/juicebox head over there now get the same accurate and reliable meter that we use.

Tricia 12:19
So in the beginning, I sat down and thought where are we going to find these? That was my first thing like, how are we going to get our name out? How are we going to get parents to trust us and share with them what we can offer to their children and say to a parent of a child with a chronic illness. Now we want you to send your child out with this big for two to four hours, and not be in touch with them in realizing that we had to kind of change a little bit of the bill that we do to make sure the parents do stay in touch with their kids, because they're not going to comfortably just let their child go off. After they've been, you know, monitoring things left and right. So I sat there and thought where am I going to find them. So I started reaching out to schools, to different pediatricians office and different offices, the local diabetes centers around us and making relationships with the Social Work team with the Child Life team, with the physician with support staff, whoever it may be, because each person in that situation touches the child and family in a different way, and builds a whole different repertoire, or a whole different relationship than others do. And so the more people that knew about us, the more wet the more ways we would be able to get our name out. I worked a lot with JDRF I still do we work together to help you know reach families there to find special ways to get into different outreach opportunities and webinars to talk about the program and how we can best help others

Scott Benner 14:00
how many families with type one diabetes Did you ever talk to before you realize these people weren't gonna like cut ties with their kids for four hours?

Tricia 14:09
You know, it was it was very, you know, and I knew it in like my heart of hearts. I do and and rightfully so, I mean, you know, blood sugar's could drop, and Spike, kids don't feel good. It's scary. Things don't always respond as quickly. So it was really kind of sitting there and figuring out how are we going to change our parameters, which was amazingly easy because I work with the best people in the world. So to change our parameters that we can make it work for the child for the parent and for the big all together,

Scott Benner 14:43
right? And so you've only been at this for I mean, not not even two years. i My first question is definitely not even even two years. How many kids did you end up finding initially? So

Tricia 14:54
right now, we have 15 kids, that we're in the process of either are on our waiting list or that we're interviewing. And we've got two currently matched. And we have five more in the in the throes of being matched right now, which I know sounds like small numbers, but to start from nothing and to get to here, it's been incredible to meet these children and families and, and to hear their stories and to hear what their needs are. And, and then also to meet the volunteers. On the same token, we've got volunteers waiting. So it probably sounds to you right now. Like, why does she have kids waiting and volunteers waiting. But it's because when we make a match, we make it based off of so many things. So geography is number one, if they're not going to live close enough to each other, they're not going to be able to see each other. The second thing is personality characteristics, we like to really think about the child and the the volunteer to see how we can put them together, that works well, for them have to have the same likes. So there's so many different pieces of the puzzle that really go together to figure out what a match gonna be. And I am super strong on this, I will not budge, we don't make a match unless we feel it's going to be a good one. Because there's no point in getting a little hopes up and a big hopes up for it to fizzle.

Scott Benner 16:21
I'm going to ask a chicken and the egg question here. So what came first? Did you have adults with type one who were like, hey, match me up with a kid with type one? Or did you have kids with type one and you realize they need a different understanding than maybe some other people do?

Tricia 16:36
So First came the kids pretty much we had a couple adults, but First came the kids. Okay. And and it was really just getting to know them thinking about two down the road, what else can we provide for them that can help them throughout their, their life? And throughout going from a young child, the youngest child we enroll is seven, though going from a seven year old, up to a teenager and beyond? And how can we help support them along their journey? Are

Scott Benner 17:05
you seeing children whose care is not stellar at home, meeting up with adults who really understand diabetes and helping them along. So

Tricia 17:16
we see both truthfully, we see children who do have more struggles at home because of their family life. And those kids need big so much to help support them, and to help them understand how important it is to take care of themselves. And how they need to put themselves first and really pay attention to what those doctors and nurses are saying to them. So setting a good example, and modeling good behavior. We have other children that come from homes where like everything is in top notch shape. Like there's no questions. They know how to run their equipment. They know how to Bolus they know how to carb count, they know everything. But they don't have that social network and they feel that isolation of I'm the only one like me here now. That's wonderful. That's the hardest thing to hear. Right there.

Scott Benner 18:14
Have other chapters reached out to you about this yet? I mean, are you the only ones doing this? Or are there other? Yeah,

Tricia 18:20
the only ones? No, we're starting it off. And hopefully, we'll see like the benefits of it. Well, I know we will see the benefits of it. But, you know, hopefully others will adopt it after we get it going.

Scott Benner 18:32
I'm just listening to you. And I mean, I have a you know, a depth of knowledge about how people with diabetes, sometimes think and feel a need and what you're describing basically because this is a weekly thing, right? Like it happens on Saturday, they get together

Tricia 18:47
now, they meet twice a month. They talk more often usually

Scott Benner 18:52
okay, but it's twice it's basically you're you're given a kid, you say four hours, it's a four hour window. Okay, you're basically given a kid to four hour windows a month where they're going to diabetes camp almost.

Tricia 19:06
Yeah, right. Yes, exactly. Yeah. And

Scott Benner 19:09
and instead of waiting all year until summer and then getting together for a week or a weekend or something and being around other people who have diabetes, they have this opportunity to not like have to uproot their lives even not that camps uprooting but it is a little bit like you have to take a break, you have to usually drive somewhere far away. And just to be around another person who doesn't look at their pump and think what does that or does it understands or is bolusing with them for lunch at the same time? It's a I think it's a really special idea who had the initial idea, can we give them credit?

Tricia 19:41
We sure can. So it was one of our board members. And she went for stuff like our when I said to you earlier I work with the best people. We are an organization where an idea comes in and we really like take it and run. So the board member came To us, and said that she really thought this was something needed was diagnosed later in life with type one. And she thought, how incredible would it be to have someone to support me. So I will share with you like in one of our matches the little girls in third grade, and her big is in her 20s. And they went rock climbing together and off, they were going up the wall, and the littles alarm started going off. And so the big said to her, you know, let's take a break. Let's fix what's going on, and then we'll get back to it. And she looked at her and said, but I hate being the only one beeping all the time. And lo and behold, she said that the bigs alarm started beeping as well. So that was like, meant to be I guess, for that very moment. But they finally they have been matched for over eight months. And it took to that moment to get to the point where the first real full blown diabetes discussion happened. Because we don't want to push it down their throat. And like I said earlier, we want them to be comfortable.

Scott Benner 21:07
Yeah, it finally came up and just happened organically. And the kid was amazing. Yeah, it sounds like by the way, I have to ask you How long were you at the organization before you intrinsically knew to say BIG and LITTLE when you were talking about it? I'm assuming it took months?

Tricia 21:20
It took Yeah, no, because I switched back on tear. This is where I'm terrible. I switch back and forth. With the families. I've always been a little but then with other folks, I'm volunteering kids because I want them to understand what I'm talking about. Because as

Scott Benner 21:36
you're doing it, my brain like like rubs against it every time like what is she saying? I'm like biggest adult, I got it, don't worry, I got it big. It's

Tricia 21:42
the volunteer little it's our kid. That's

Scott Benner 21:45
a great example of you know, you don't rush right, you don't get together on day one and go, Hey, diabetes, allow me to, you know, just like you get together and then it comes up naturally because it was going to sounds like they both got active and their blood sugar's fell. And then they can have that conversation like that. And you can tell even through your retelling how much the kid wanted to say that probably like how important it was for them to maybe be able to unburden themselves to somebody who they were like, Oh, this is a person who will actually understand this.

Tricia 22:14
Yeah. And then the parent, the parent of the little, was so grateful that she opened up and said that, that she got to that point where she could say those words and make it it and just express herself, I guess, express herself in a way where someone else going through the same thing understands. Now these two are like the Bobbsey Twins, and they set their screen their background screen. So they have the same pictures when they're out. And they do this and they do that together. But it's more from this friendship. That obviously is the beginning of the relationship and how the relationship starts into a support system. For diabetes.

Scott Benner 22:59
It's really something, how much are you figuring out as you go? Like, I'm sure with 15 kids who perhaps hasn't happened yet. But eventually you're gonna identify a child with an eating disorder? Like, are you able to like do you have services in mind already, where to guide people to? What about when you meet somebody who can't afford, I don't know, insulin, or supplies, or what happens when you meet people who are just like, you know, a onesies are, are incredibly high, and they don't know what to do. And it's more than just the the big little like, setup can help with do you have? Sure, yeah. What are you doing for that?

Tricia 23:38
So we do work a lot with different wraparound services, and the local hospitals as well. We've really partnered with them, especially, I would say Children's Hospital has been incredible to partner with, because we can share information back and forth. So the first thing you know, on enrollment, they say release forum so that we can talk to people, which helps us dramatically. So if a situation comes up, that we can go back and discuss it, we have had the a one C thing where a onesies are out of control. And that's something the hospital works directly on with them. But a big can help to influence why it's so important to get that number down with other kids. They've seen just with the blood sugar's all over the place, and there's never just some kind of commonality and they can't pinpoint what's making it spike. And we know it's because the kids are bolusing or they're not taking care of themselves properly. So the big they're helping them to understand why it's so important. So if we know like when we do this interview with the little we do it with their parent or guardian and the child themselves, the parent or guardian we meet over zoom. It's a great conversation. We do it when the kids aren't around. So the parent guardian can say whatever they need to say and get it out. And then we go in and we meet with a child face to face.

Scott Benner 25:07
A lot of things being accomplished here. Yeah,

Tricia 25:09
there's it's like, it's really comprehensive program very comprehensive and, and when we meet with a kid have to face are a little I'm going to switch my words here we go. When we meet with our littles, we asked them a lot of questions, and especially around their care for diabetes, finding out exactly where their comfort level is. And I mean, I'm sure this is not a surprise to you. But so many kids report back on bullying. One girl told me her class called her the weird robot. And they didn't want to sit next to her because of her robot device. I mean, it's just working through these kind of boundaries. And these breakthroughs, the

Scott Benner 25:53
most criminal thing there is that kids burn is terrible. The weird robot, like what kind of a dig is that? It's just not well thought out. It's it's low level, where's

Tricia 26:01
the teacher in that situation, too. If it's

Scott Benner 26:05
subpar bullying at best, I don't like it. But it

Tricia 26:08
is bullying. It's 100%. But it's not even. It's bullying.

Scott Benner 26:12
I have a question that I want to I exist in my mind, and I want to get through it like so. I have to admit, when you reached out to me, I thought Jewish Big Brothers Big Sisters. I didn't know that. There were I just thought there was Big Brothers Big Sisters. But you're not like if if I have a kid in the greater Boston area, and they're not Jewish, you help them as well. Right? Like it's not thank you

Tricia 26:35
for asking that. I did not say that. At first, we serve everybody. So we serve even though we are Jewish, Big Brothers, Big Sisters. We are an affiliate of the Big Brother, Big Sister, Association of America. We serve everyone regardless of race, religion, ethnicity, identity, orientation, etc. If you are in need of a service, you come to us and we will start working with you. Similar

Scott Benner 27:02
to like when you hear Catholic Charities, for example. Right? That's an organization helps everybody it's not just it's the way it's run. i Okay, how long has it been in existence? So

Tricia 27:12
Jewish Big Brothers Big Sisters has been around for? I think we're up to 104 years right now. Okay, well, long standing prominent agency. Yeah.

Scott Benner 27:26
Well, so what made you want to come on the podcast to get the word out, wanted

Tricia 27:29
to spread the word about what we're doing. And for people to reach out if they have questions, or if they have ideas, I wanted to just share the service that's out there for people in the greater Boston area. And I will say we serve over 90 cities and towns so from like, out Western Mass a little bit all the way up through the north shore in South Shore. So we go everywhere, everywhere.

Scott Benner 27:55
It's freezing cold in the wintertime. I know where you're talking about. Yeah,

Tricia 27:59
it's a little chilly today here, but we don't have snow yet. So we'll keep it that way.

Scott Benner 28:05
Let's kind of take a second here. Can I give the phone number from the website? You sure can. Yes. 781-516-2090. Or it's j, b, b? b s.org. Is that correct?

Tricia 28:20
Yeah. Okay. Yeah. And right from our website? No,

Scott Benner 28:24
no, no, no, J, three B's and s.org. And right from your website, what you can

Tricia 28:29
find the type one diabetes program, there's information to enroll, there's a direct link that they'll get to me. And then we'll be able to set them up and get them going.

Scott Benner 28:39
And there's no cost. Is that correct? For the this is a totally free service.

Tricia 28:43
Yep. There's no cost to the child or family

Scott Benner 28:47
at all. And the adults are donating their time. They're

Tricia 28:50
donating their time. And truthfully, they're also donating their money and paying for any outings. For children.

Scott Benner 28:58
I gotcha. So we I take I go rock climbing and there's a charge to get into the something. It's It's on me as the person who's setting up the excursion. Do the big Yeah, gotcha. All right. Well, that all makes sense. Yeah. Because geez, if you were paying for it, I'm like, Where would I go? Maybe get a nice meal. Get a steak. We'll start slow in the morning. Get an amen.

Tricia 29:18
We'll keep going all day. But yeah, no, no. Sorry. Sorry. Diverse. No,

Scott Benner 29:23
I didn't. I didn't imagine any differently. Actually, I just I just wanted to make sure people understood that they'd be donating. So you're looking to hear from children who are looking to be paired up and you're looking for adults who'd like to donate their time as well.

Tricia 29:36
You got I'm looking for a ball. Okay. Well,

Scott Benner 29:39
I I'm gonna just say this. I feel personally responsible now to make sure people reach out to you. So if you're listening and you fit into one of these buckets, like, give it a try if you're interested, you know, I mean, what could it hurt to reach out and talk to Trisha a little bit and, and get some more information? Right.

Tricia 29:53
Right. I mean, this is it's really like, truthfully, people will do People involved in our program will tell you that this is a gift and, and we are only here to help serve people and to make things better for kids so that they're more comfortable in their own skin, and that they feel good about living with a chronic illness. The one thing I said when I first applied to work at Jewish Big Brothers Big Sisters, was that I never want a child to feel like their illness owns them. I want the child to own their illness. That's wonderful. And I feel by giving them a mentor. It's something that can really help to teach them how to take role, and how to feel good about what's going on in their situations, and feel as though they can live with type one a successful life which we know is possible. And to make it through all the different ages and stages with someone by your side.

Scott Benner 30:51
Can I ask you, how has your understanding of type one changed over the last year,

Tricia 30:57
I have learned so much, I can't even believe so I knew what type one was, I knew that it wasn't anything like type, oh, you know, all of those things. But one just learning from hearing from children, the misconceptions that they go through, that's been eye opening, but then to learning about bolusing learning about closed loop systems, learning about all these different systems that kids have kids that are on multiple daily injections first versus on a loop system, it's been really interesting to me to see the paradigm shift and the learning curve for myself going through this. And I feel like they can actually have a conversation with a parent of a child with type one. And not be clueless and understand. I mean, do I understand what it's like to wake up in the middle of the night? Because your child's blood sugar's crashing? No, I do not have that in my back pocket. But I do know what it's like to be a parent, I have two teenage girls. I know what it's like to work with children with chronic illnesses. And I know what it's like to hear a parent going through a traumatic episode and being there to support them through that time.

Scott Benner 32:10
Have you had an experience yet where you thought, Oh, I wish I could take this knowledge back with me. 15 years ago when I was working in hospitals?

Tricia 32:19
Yes, I wish we could have done a support group then for kids like this. I wish I could have set something up. That would have reached children when they're in the hospital differently for type one. And given them more tools to go back to school with

Scott Benner 32:35
Yeah, yeah. So if somebody's listening to this, whose kid is already maybe part of the Big Brothers Big Sisters program in another place, you know, outside of Boston? Yeah. You're comfortable with them, asking their chapter to reach to you and you'd be happy to explain to them how you got this setup? What's working? What didn't like give them a roadmap?

Tricia 32:58
100% Of course, right? Like we all have to work together. There's there's no I in team will go for the cliche. And we need to you know, everyone's here. If your child is involved in a Big Brother, Big Sister program. They're in it because you knew they have a need for something. Yeah. So why not just expand that lead?

Scott Benner 33:18
That's fantastic. It really is. It's very kind that you'd spend the time to explain to somebody else and get it rolling in other places, too, if they were interested. I think we've covered everything really well. I want to make sure you feel that way. And then I have one last question for you. So first of all, is there anything we haven't said that we should have that I missed? No,

Tricia 33:36
no, we've got it all. Great. I we've hit all my little bullet points here.

Scott Benner 33:40
So here's my last question. How come you're not like let's go park the car on the yacht? How come you don't sound like that? Do you? Not from from New York. He's gonna say

Tricia 33:52
no, no, but my youngest daughter Sure. Does. She parks? She does. She has no RS whatsoever. No, no. I'm from New York.

Scott Benner 34:04
Did you go to the area for school and just stay?

Tricia 34:06
I did. I did. I came here because I knew I wanted to be a child life specialist. I came here to go to Wheelock College. During that time, I wrote a grant with a physician that I worked with to get a program started in surgery and trauma. And then from there, I met my husband who's here and that's how I ended up saying she it's

Scott Benner 34:27
always a boy. I every time I interview somebody I'm like, how did you end up in Alaska and then the story starts and a boy and then by the way, that Alaska story, which I'm not going to bother you with is in a past episode. The boy disappeared. She stayed in Alaska, and I was like,

Tricia 34:42
Oh my goodness. My guys still around.

Scott Benner 34:48
Oh my god. Okay. Well, I find AJ please, I hear some stories. I genuinely appreciate you taking the time. I really appreciate you guys reaching out actually. There are I will I'll tell you something that's backroom that you would know, a lot of people reach out to me to get their thing out in the world. And most some, there are times where I'm like, um, you know, it's business related or something. I'm like, I'm not here to like, you know, shill for your business. And I don't do stuff like that. But boy, when I got your, your initial note, I think I misunderstood it at first. And then you guys were persistent, which I appreciate it. Because then when I really dug into it, I was like, this is something I'd like to really get behind. So I appreciate the effort that you put into getting on the podcast. And by the way, this is not an this is not an invitation for other people who I've said no to, to come back. And

Tricia 35:37
I have to say, Tonya, my ally, who first additionally reached out to you, she is just above and beyond. And she's our Director of Recruitment and engagement. And she's the one that helps me find our bigs. And without her like we work hand in hand together. Yeah. Without her, I wouldn't be able to do this. So I

Scott Benner 35:57
have one last question. Sorry. I know I said, I had one last question that I have been asked. You can have, like 10. Last question. How's that? What about a scenario like me, like, I'm not offering to come to Boston, but I'm just using me as an example. I do not have type one diabetes. But some people might argue that I might make a fantastic mentor for somebody with type one diabetes, like So could a parent of a child with type one who's maybe kids have kind of flown the coop or I guess, gone to college? Like, could they be a big for a young person with type one? Like, are there worlds where you match type ones with non type ones that still have a lot of information about diabetes? You ever thought about that one? How can

Tricia 36:34
I tell you? I don't know. I honestly I'm going to be honest. I don't know. We haven't explored that avenue yet. Well, that's

Scott Benner 36:40
there's my little bit for you. Like maybe that would be alright. Yeah. Take that back to the table. Yeah, get some like, you know, empty nests, mom with a ton of energy. For at least one of those kids, they got all that energy. They don't know what to do with. Trust me, they know a ton about diabetes, and they might not have anything to do with it anymore. Anyway, I don't know. Maybe it wouldn't work out. Or maybe it doesn't fulfill the exact calling of the idea. I mean, as I think about it, maybe it doesn't, but I don't know, I just want to throw it out there.

Tricia 37:06
The reason why I was like I don't want I never a straight off no person. But the one thing I can think of is like there is so much comfort in a child wearing a blood glucose monitor, seeing an adult wearing it as well. There's this kind of bond that happens immediately. I see it

Scott Benner 37:28
very well may not be a good fit for the overall idea. It just occurred to me and I wanted to ask, so thank

Tricia 37:34
you as support for the parents, the other parents that have younger kids to talk to a parent who's gone through all of

Scott Benner 37:42
the show, you're gonna make more work for yourself a big one big program, a parent, a parents of kids with type one program.

Tricia 37:49
It who knows you never know. I mean, look at I just said to you, I never say no right away.

Scott Benner 37:55
Well, listen, that's, that's also not a bad. I mean, look, there might be other places already set up to cover those things. But what I'm thinking is if you have 15 kids who are in your program, let's just pretend it was 16. Now you have eight parents and eight parents who you could maybe put together that might not be difficult, and it might be valuable and needed and desired by those people. I listen, I have my Facebook group adds 150 new people every four days. Wow, those are people who do not have community and generally speaking are looking for community and support. So I think even that's a good idea. You could get into all kinds of side hustles here. I know they're not called side hustles but you're doing it for an organization. We

Tricia 38:40
could get all we could get all different kinds of programs. Yeah, but you could do your from Jersey now you can do your side hustle mob program.

Scott Benner 38:54
I have side hustles I'm all over the place trying to stay stay above water. But okay. Well, Trisha, this was really nice to you to do. Give me all the information again. What's the website? And one more time?

Tricia 39:05
Sure. So our website is www.jbbs.org. And you know what you gave a telephone number you gave our direct line phone number? I don't know is that I'm a terrible person. I don't know where to get my phone number off the top of my head.

Scott Benner 39:27
I don't think you're a terrible person. 781-516-2090

Tricia 39:32
There you go. All right. That's why we work together see teamwork already.

Scott Benner 39:36
She's like, I know my phone number. There are other ones.

Tricia 39:41
Well, right. That's I know my cell but anyways,

Scott Benner 39:45
asked me my kids cell phone numbers. I have no idea. No, I

Tricia 39:49
know. You're gonna say to me, excuse me. I have to put their name and with that contact and I was like,

Scott Benner 39:53
I have absolutely no idea. All right. I really do appreciate you doing this. Can you hold on one second for me?

Tricia 39:58
Absolutely. Absolutely. A

Scott Benner 40:07
terrific was that make sure to check them out if you're interested in helping. I'd like to thank ag one for sponsoring this episode of The Juicebox Podcast and remind you that with your first order, you're gonna get a free welcome kit. Five free travel packs in a year supply of vitamin D. That's at AG one.com/juice box. A huge thanks to the contour next gen blood glucose meter for sponsoring this episode of The Juicebox Podcast. Learn more and get started today at contour next one.com/juicebox And here's a little bonus for you for listening all the way till the end. In the Pro Tip series that runs between Episode 1001 1025 I think there are ads from contour with a link to a free meter. You have to be a US resident and it's only while supplies last but there are supplies left at this moment. So head over there. Listen to the diabetes Pro Tip series that begins at episode 1000. Get that link and get yourself a free contour next gen meter while supplies last US residents only the episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

#1109 Type 3c Diabetes

Lara has type 3c diabetes. She lost her pancreas, spleen, gall bladder and part of her stomach during a pancreatic tumor surgery.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 1109 of the Juicebox Podcast.

46 year old Laura has typed three C diabetes. She lost her pancreas, spleen gallbladder and part of her stomach during a pancreatic tumor surgery, Laura found the podcast while she was looking for help with her new diabetes. She found episode 279 and has been a listener ever since. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. When you place your first order for ag one with my link, you'll get five free travel packs and a free year's supply of vitamin D. Drink ag one.com/juice box. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout that's juice box at checkout to save 40% at cozy earth.com. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show. This episode of The Juicebox Podcast is sponsored by the continuous glucose monitor that my daughter wears the Dexcom G seven Dex comm.com/juice box Get started today using this link. And you'll not only be doing something great for yourself, you'll be supporting the Juicebox Podcast. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn. Find out more at G voc glucagon.com. Forward slash juicebox My

Lara 2:02
name is Laura. I am Canadian. I live in Canada in British Columbia about an hour outside of Vancouver. I am 46 years old. I'm married and have one daughter who is 17 graduating high school this year and we couldn't be more excited about that. Nice. And I'm currently in battle with pancreatic cancer.

Scott Benner 2:25
Not as nice. Okay. All right. Okay, so my first question is before we started recording, because of the spelling of your name, I said is it Laura? And you said yes. But then because of your Canadian accent I thought you said Laura so now I don't know what to do.

Lara 2:39
You know what? It's a okay by me. i It's pronounced Laura. I get Lera Laura, it doesn't bother me whatsoever.

Scott Benner 2:47
But I want to get it right. It's lar I'm leaning on the far too much. Right, Laura? Yeah. So Laura, did I get it?

Lara 2:57
Got it?

Scott Benner 3:01
Well, I was gonna curse right off the bat and say, that sucks. But when did you learn about the cancer?

Lara 3:08
Well, it was March and NetBackup. A little bit because it all started in March of 2021. I was two weeks out of moving we had a major move underway to move to acreage in a much larger house. And two weeks before our giant move. I ended up in the hospital with pancreatitis, which was unusual for someone of my age and my spent seven days in the hospital being treated for pancreatitis. I'd had all of the CTS, the MRIs, everything came out perfectly clear, clear pancreas. They did find in July, when I had the secondary scan an abnormality in a bile duct. And at that point, they told me that they were going to monitor it and I might need to have my gallbladder out. Okay,

Scott Benner 4:01
so can I ask first let me let me let me step you through it. What are the symptoms that led you in the hospital initially,

Lara 4:10
I had a terrible, terrible back pain. So it was radiating in the middle of the night from my mid back through my shoulder blades, severe nausea and oily stool, domino pain and just a general feeling of unwell. But actually, by the time I ended up in the hospital, my symptoms had recovered, but my bloodwork was still showing highlight paste numbers and inflammation markers were up. So the only way to fix that is to put you on IV drip only and no food for seven

Scott Benner 4:51
days. Okay, lipase, is that just an indicator for the pancreas? Is that right?

Lara 4:57
That's right. And by Those numbers are high

Scott Benner 5:01
oily stools never something you want. I don't care for what reason no,

Lara 5:05
but I was on a keto diet at the time too. So I kind of thought at the same time maybe that was all related but it wasn't something and initially I didn't have any pain that started later. So I didn't really think much of it to be honest with you, it kind of came and went. And in hindsight, really there the warning signs were there from long ago and that's kind of what I want to bring attention to people that you really in tune with their body.

Scott Benner 5:34
If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily G vo Capo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you storage evoke hypo pen and how to use it. They need to know how to use Chivo Capo pen before an emergency situation happens. Learn more about why G voc hypo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma. Visit G voc glucagon.com/risk For safety information. Yeah, now um, my my I'm doing a little reading right here. So lipase does not correlate to pain, in case you're wondering. It doesn't end it. There is a concern here is is lipase attached doesn't mean diabetes is, you know, for example. And it does say that lipase elevation shortly precedes the onset of type one. But that's probably a thing. Nobody knows when it's happening. I would imagine. That's right,

Lara 7:16
yeah. And it's not something that they normally test for unless you're having issues. So until you're already at the point, we're having some symptoms and some issues. That's when it looks when they look for it. And it was actually by chance, my doctor thought, oh, I shouldn't check for this level, because he had also had a patient recently just before me with the same issues. So and that was her issue. Yeah,

Scott Benner 7:42
I was wondering how I got to it so quickly. Honestly, plus, and I don't mean to be pejorative, but you're in Canada. So you it's a province coin flip whether you get good health care or not right.

Lara 7:53
Is that ever the truth? And I can tell you some nightmare stories that I've been through recently, actually, about that. But in this case, in the very beginning stages, I was treated very well. They were on top of it right away. I had the proper scans and everything seemed to be going along really well.

Scott Benner 8:15
But yeah, so So what was the treat, what was the initial treatment?

Lara 8:19
The initial treatment for me was hospitalization, clear fluids. After a few days, I was on only IV fluids, because they're they put you on digestive rest is really the only way to get past that. And then by the time I left the hospital, I thought it was all good to go. Yeah, sure. We'll check and see if maybe the gallbladder needs out later, but I felt totally fine. Okay.

Scott Benner 8:47
Was the gallbladder showing any indication? Or was that just the thing they said we have to watch out for?

Lara 8:53
Gallbladder and pancreatitis go together very often. And because they found that abnormality in the bile duct, they were watching that. And that might have been the trigger where they would have pulled the gallbladder out if that hadn't resolved itself.

Scott Benner 9:10
And my last question is when they when you said they scanned your pancreas was that ultrasound?

Lara 9:14
It was CT scan CT. Okay. Thank you. Sorry,

Scott Benner 9:18
God, keep you you left. You thought you were good to go. I'm sorry. Keep going.

Lara 9:22
And then so they said come back in six months. And so that put it around February my birthday of 2022. And I was feeling fine. Well, they scheduled me for the follow up CT scan and I was expecting at the very worst that I would have to have gallbladder surgery, no big deal. But I got a phone call after that initial scan in February of 2020 to two days later to come back in and I knew at that point that I was in trouble. So at the second scan, they found a one Point four millimeter mass on my pancreas. It was very, very small, very, very early, it had zero spread, there was no indication of any real seriousness at that point. They thought no big deal, we can get in there really quick get it out without having any spread. And I didn't have any symptoms. They thought that this would be a curable thing for me.

Scott Benner 10:28
For clarity, you said it once, but I want to make sure I repeat it, the pain was gone, right?

Lara 10:32
pain was gone, I was totally fine. I was actually very annoyed that I had to go in for this scan. Because I had to take time out to do it. And it was a contrast dye one, which I didn't really like doing. And I thought to myself, well, I was fine. So why am I doing this? But I did my due diligence. And thank God I did because it was a bad thing.

Scott Benner 10:58
Before we move forward. And you tell me about you know what they what they decided to do? You mentioned this, but I want to dig into it for a second. You said hindsight like I don't know if you use those words, but I thought like were their hindsight symptoms were even for years before did you have issues that you ignored or stuff that you'd like, look back and go, Oh, I think this was a thing.

Lara 11:21
The only thing I would say that I should have paid more attention to was the symptoms from the pancreatitis, which was the oily stool, and I should have been on top of that. But with the keto diet, I was I thought, maybe I'm just not digesting Well, which clearly wasn't because there was issues there. And it was completely unrelated to the keto diet. But that also could have been something that triggered it as well.

Scott Benner 11:51
How long before and for how long? Did that occur? Before you got the lower back pain shooting to your shoulders? I

Lara 11:58
would say several months, but not continually off and on not every day. So I didn't really think anything of it. And that was silly on my part.

Scott Benner 12:09
You know, honestly, probably not. You know what I mean? Like, because for every person who can say, I ignored this and it turned into cancer. There's a there's a million people, you know what I mean? Who are like like, nobody guess what, everything was fine. So I mean, don't beat yourself. Yes, that is the case. Yes. You don't beat yourself up. But but at the same time, it's it's great to know what to look for. Also, I think it helps highlight that your pancreas has something to do with your digestion and a lot of people don't know that. So huge portion. Yeah, okay. So they see this this little mass and they are going to try to take it out. So what are next steps.

Lara 12:46
So the next steps are PET scan and biopsy. I had the referral to a hippo, that hepatic biliary oncologist surgeon who was confident that this was going to be a curable thing for me, given that it was so small. So PET scan showed just this very same, actually, it showed the same tumor very small. It also led up my thyroid, which I had a thyroid nodule, they said that was going to be okay, they would do a fine needle biopsy on that, but it would be unrelated to what I was dealing with with pancreatic cancer. The biopsy was done, and it confirmed that we were dealing with invasive ductal adenocarcinoma, which is the worst kind of pancreatic cancer to have. It spreads quickly. And it's quite aggressive. But we were still confident that with the surgery, and then six months of chemo, after the surgery was done, that I would have the cure that we were looking for. So I went in very, very positive and confident that I was in good hands. And that things would be a okay. And I do want to say that this was all extra scary for me because 10 years ago, we lost my uncle to pancreatic cancer. Seven really? Yes.

Scott Benner 14:13
Yeah, I have to tell you, I don't pray. I don't know if people know this. I haven't said this in a while. But when I sit down to record, generally speaking, I don't really know what I'm doing. I don't like I don't pre plan my conversations. And I don't really look at my calendar. So you know, some people really want to know what the weather is before they go outside. I'm more of a wander outside and see what the weather's like person. And, and I do that with this too. And I just want to tell you upfront, I don't want to slow you down. But if I pause, I lost my mom to cancer in the last year. I'm having a more difficult time with this than I thought I would. So don't I don't I don't want to stop you but we're definitely having this conversation. But at some point, I'm gonna cry today just so you know. I like let's just put,

Lara 15:01
and I likely will to a okay. Okay,

Scott Benner 15:04
good. Good as long as we're both expected. Yes. Yeah, you just it just it took me by surprise a second ago. I was like, I don't feel right. Why do I not feel right?

Lara 15:12
I guess Yeah.

Scott Benner 15:14
Everyone's got all the all the hope in the world did you get a feeling like they really thought that or that they were just being positive. The Dexcom g7 is sponsoring this episode of The Juicebox Podcast, and it features a lightning fast 30 minute warmup time, that's right from the time you put on the Dexcom g7. Till the time you're getting readings, 30 minutes, that's pretty great. It also has a 12 hour grace period, so you can swap your sensor when it's convenient for you. All that on top of it being small, accurate, incredibly wearable, and light. These things in my opinion, make the Dexcom g7. a no brainer. The Dexcom g7 comes with way more than just this. Up to 10. People can follow you, you can use it with type one, type two, or gestational diabetes, it's covered by all sorts of insurances. And this might be the best part, it might be the best part alerts and alarms that are customizable, so that you can be alerted at the levels that makes sense to you. dexcom.com/juicebox links in the show notes links at juicebox podcast.com, to Dexcom. And all the sponsors, when you use my links, you're supporting the production of the podcast and helping to keep it free and plentiful. No,

Lara 16:30
I really did because by all stretches of the imagination, this was found by accident, it was found so early, it was very small, almost at the point where it wouldn't even be something that would be detected, it has to be a certain size before it can be detected on scans, the cells can be caught and PET scan just floating around because they light up like they feed it they feed them sugar and cancer cells light up like Christmas tree. But the actual tumors need to be big enough to be able to be found. So this was just at the point it was so small surgery, there was going to be a distal pancreatectomy which means they would have taken half of the pancreas and my spleen. Because those things are connected. And by all searches of the imagination, they told me that the pancreas that was left over was going to take over the insulin production. And I wouldn't be a diabetic I would be fully cured and just had to get through this hard road for well, six months surgery, well recovery and then six months of chemo. So they started the chemo six months after the full surgery.

Scott Benner 17:43
So you thought I'm getting a surgery, not much is gonna change other than I'm not gonna have cancer anymore. And yeah, okay, so when did they tell you? That's not what happened? Is it like, right when you woke up? Or how does that go?

Lara 17:56
My surgery was scheduled for March 28 of 2022. And on the 25th of March, I had my last CT scan before going into surgery. And I never saw the results of that. And while I was being wheeled into surgery from the little holding room, after I'd been laying there crying my eyes out scared as scared could be. I met the surgeon for the first time face to face because this was still times where they were doing phone appointments. And I hadn't seen his face events. So there he stood with me and told me that the tumor had grown in that six week timeframe from one CT scan to the next from 1.4 millimeters to four and a half centimeters and it had taken over the entire pancreas.

Scott Benner 18:49
I'm not good with the metric system. But that sounds like a significant increase.

Lara 18:53
Significant is right. So it went from one tiny little dog and they're taking over the whole pancreas. And at that point, he said there still haven't been any spread. But the likelihood that I was going to lose the entire pancreas was was pretty probable.

Scott Benner 19:14
Yeah. For people who like me who don't know the, the metric system. That's about a 40 times gross or growth of, of the mass. Yeah, it grew by like 40 times its size in six weeks. That's right. Yeah, that's

Lara 19:29
the one thing invasive and aggressive. That it that it is. So the importance of the early detection was astronomically important. I can't even say because at this point, the surgery, the whole pancreas could still come out. The cancer hadn't still spread at that point. So there was a silver lining to that although I was completely unprepared for what what I was going to find And when I woke up,

Scott Benner 20:01
so yeah, it's like, it's like the opposite of Christmas, you got two gifts instead of one. And usually they were like, hey, guess what? You have cancer and diabetes. Like I didn't have either these things five minutes ago. What the hell and so you're coming out of a surgery as a type one, basically, it's type three, right? It's what they call it, type three, C, three, C, type three, saying, you're coming out of surgery is a type A type three, C, and somebody's telling you, hey, there's way more cancer and then than we thought, and that's all out of nowhere from. And so for all the crying you did before, how does it you do a little more after I imagined. So

Lara 20:44
the surgery was nine hours when I was supposed to be like three and a half. So that alone was a huge undertaking. And I when I got to the recovery room, it was very late. And that's when they told me that I had lost my whole pancreas. And I also awoke to nurses in sheer panic, because they were unable to control my blood sugar. So they kept me in the recovery room because they're got me on this point, insulin drip, which has to be done with one to one care. And they're worried about DKA at this point, and I don't even know what DKA is.

Scott Benner 21:26
You're not even awake. But you definitely don't know what it is right? Also, I take your point about the time. I remember, we dropped my mom at about eight or nine in the morning at the hospital during COVID. We couldn't even go with my like 70 At that point, 78 year old mother, I think at 78 or 79, we basically wheeled her through the front door gave her a good running, pushing was like good luck, and then had to leave, you know, like because they wouldn't even let you come in with her. And that was frightening in and of itself. But the doctor said, I'll call like, my number was the one he was going to call after the surgery was over. And I'm not lying to you. It was like 730 at night when he finally called me. And he and he called the say, my assistant basically, is still closing your mom up, but I'm done now. And I was like, Wait, this this was like I just figured the schedule got messed up, or they lost her like seriously? Yeah, because I really, really did just kind of run through the door with the wheelchair. And we're like, alright, mom, like, well, good luck. Yeah. And like I said, maybe she's just sitting it all somewhere, you know, but, but instead, it took the better part of the day to do what they ended up having to do for the same reason, because they got there. And they were like, wow, there's more here than we expected. So my

Lara 22:44
family was completely unprepared because they were waiting at the hospital. And at some point, they had to go home. And I remember them, my husband saying, Yeah, we got the phone call. We were almost home. And it was way late at night. And the surgeon called and told him but I still hadn't spoken or seen any of my family and listening to these nurses in panic about these things that I don't know

Scott Benner 23:11
about. They're like, hey, we can't get our blood sugar under control. And you're like, Well, that wasn't part of why I was here.

Lara 23:16
Right? Yeah. And I don't even know what numbers mean at this point. Right? So my sugars were at 25. And I don't know what,

Scott Benner 23:27
oh, I could tell you, but only after I get a conversion chart on my website. I

Lara 23:32
have a conversion chart saved on my phone from the Juicebox Podcast.

Scott Benner 23:35
Thank you 20 Oh my god. 25 Wait, are you serious? Yep. Oh, that's a for like a 450 blood sugar. Yeah, yeah. Okay, for hours

Lara 23:45
for hours and hours and hours. And once they got them finally back down, I think it was about 130 in the morning is finally when I left recovery and then went up to the ward, but I had had asked to call my mom because I just wanted my mom I just as you do. I just needed her and so I had the phone call with her. completely out of it totally confused and very angry. Yeah,

Scott Benner 24:14
and angry for a Canadian. What does that even mean? Were you saying dharna

Lara 24:20
Oh, I can get super angry.

Scott Benner 24:23
I always tell people you know you don't know about Canadian So people always say there's there's not as much gun violence in Canada. I was like, but they love to stab each other. So don't go give him too much credit.

Lara 24:31
I also hear we're very squarey

Scott Benner 24:37
Well, I know for sure in bars. You're very savvy. So

Lara 24:42
because we can think guns here right? I

Scott Benner 24:44
assume that's why it's happening. Yes. So while you reached through your mom, like you skipped right over? I don't mean this in a bad way. I honestly don't but when you thought I need help you didn't go to your husband. You went to your mother.

Lara 24:59
I went to my mom. And I always do especially with the medical stuff because she she understands more my husband's a little bit more of a stress case when it comes to all of these things. And I knew that he had my daughter with him and I kind of didn't want to get her involved at this point before I'd even figured things out. And I think you always just ride I do miss reach for my mom. I

Scott Benner 25:25
just think that this highlights a mother's instinct on your part. Because if I was in trouble, I would drag everybody into my heart immediately. Be like, I can't believe you people left. Like I need everyone back here. I want to visual there should be candles, crying, crying shifts. So every time I look up, I see somebody said

Lara 25:47
I went total opposite. I went into like recluse mode. I didn't want to see anybody at all.

Scott Benner 25:56
Did you think you were going to die? Is that? When does that occur to you the first time.

Lara 26:01
The first time it occurred to me that I might die was when I first got the first report with the that I had pancreatic cancer because I'm in the Google tells you no one comes out of it. Yeah. And so I tried really hard. And I did, probably to my dismay, actually, in the end, I stayed off the Google and I stayed off all of the Facebook groups for praying pancreatic cancer, because it was all nothing but doom and gloom. And I wanted to stay positive because I knew mindset had something to do with it. And I have felt that I was in good hands and that I should trust the people that were dealing with me in my situation, and not the random strangers that have had a myriad of different experiences, some good, some terrible. And I didn't know where I was going to fit into all of that. So I didn't do a whole lot.

Scott Benner 26:57
You don't want to jump into somebody else's story and put it on yourself when maybe you're not in the same position they're in. Yeah.

Lara 27:03
Especially since so many of those stories are not good. It was not a safe place when I was learning a whole new life at the same time.

Scott Benner 27:14
Yeah, you make yourself crazy, I would imagine. Totally. Yeah. So okay, so you're, you're kind of locked down your you got your mom, which does your mom say anything valuable? Or is it all just a lot of love. It's

Lara 27:25
just a lot of love. Because at this point, she didn't know what was going to be valuable to say, other than she was it was going to be okay, and that she would be there every step of the way, which she has been holding my hand every step of the way along this whole journey. She's not left my side, and has been an amazing support for all of us. My family included, so we couldn't have done any of this without her.

Scott Benner 27:53
Did she? Get off the phone with you? And latch up the dogs take a big cut a whale blubber and head right to you on her sled? Or how did she stay where she was? That's how you guys get around. Right?

Lara 28:07
That's right. So she was there early the next morning. So at one in the morning, I ended up back in my room, our room, which was nice. I had a private room, which doesn't happen very often here in Canada, they're usually a four bed ward room. And given the nature of what I was going through, I appreciated that time where I was just alone, and not having other patients in the room. But she was there. And you almost had to kick her out to leave at the end of the day. So I spent nine full days in the hospital recovering from the surgery. The next day after the surgery they'd sent in the first endocrinologist that I was to me and I sent her out the door as fast as she came in. Because she knew immediately she wasn't going to be a fit for me. How come? She came in. So bubbly and squealing with her hair and a high ponytail and she's talking to me like life is good. We have insulin and she was so trying to be this bubbly positive person and I was just I'm like I like the facts. I don't need no. Like lucky stuff. Tell me where it is that like, tell me what I need to know what I need to do.

Scott Benner 29:26
We might get along really well because yeah, I like the most despicable part of her was her high ponytail.

Lara 29:35
I just couldn't I couldn't deal with her. And she just she came in she gave me a meter. She gave me and left nurses a basic lard pen. That's what that's what how that went down.

Scott Benner 29:48
You know what I was really surprised by earlier in your story. You can't be the first person to go into surgery and come out without a pancreas. Now why were the nurses so thrown off by it in postop because obviously you're not a person Using Basal insulin when you went in, so you have no insulin at all, like your body's like devoid of insulin. And so I'm not a doctor, I just want to be clear. And if you took a person and handed them to me and said, Hey, I just took this person's pancreas out, my brain would go, Well, we have to get Basal insulin going right now. I don't know why that's difficult. Like,

Lara 30:22
I don't either, but I do know that they don't do these surgeries very often. And I am one of the few that it does happen. Because normally, these things are found too late for this to make a difference. So

Scott Benner 30:36
they don't do the removal because it's over by the before it starts.

Lara 30:39
That's right. Yeah. So that part I get, but when you're when you are in that one to one care recovery room, I mean, surely you had diabetics through there before. You know how to deal with the one to one and IV drip of insulin, but they were shocked and didn't know

Scott Benner 31:00
what to do this endo that comes and sees you after the surgery. She wasn't meeting your energy. Let's just say that. Yeah, because your energy was, hey, I just found out I have way more. I had way more cancer than I thought I did. And now I have diabetes on top of that. And she came in like Mr. Rogers, and you were like, No, we're not doing this. Yes. Right. Okay. I understand, by the way. So what ends up happening then, like you got your Basal guard pen, but what else did you get out of that?

Lara 31:27
So they never actually, this, this is this is I know, you're going to find this shocking. And I've heard because I listened to the diet, the diagnosis stories, on the Juicebox Podcast, they would come in at night and give me a shot of basically or they didn't explain to me what that was. And then with my meals as I could eat, because there was a long period of time where I had just really any difficulty because they remove part of my stomach as well. So this surgery comes with gallbladder spleen removal part of your stomach, and your pancreas. So they've reconnected at all

Scott Benner 32:08
why the stomach was there, cancer there.

Lara 32:10
There wasn't but just how the digestive tract works. They have to when they remove, yeah, the stomach smaller. Okay.

Scott Benner 32:19
The Basal cars, Basal cars, let Lantis so that's your so they were giving you slow acting at night, but not telling you what it was. They didn't say this is Basal insulin or nothing. Well, you know, you did scare the lady away. Who might have told you?

Lara 32:35
Well, she didn't. She came in. And she wasn't even really prepared to give me any education or anything. At that point. I think they thought maybe too early. But obviously, they didn't know me. Because I need to be armed with the facts. And I need to know what it is that I'm doing and how how, like, how is this going to work? Like, you can't just come and shoot me up with something and then expect me to know what it is when this hasn't been a part of my life and it and I actually, truth be told only no one other type one diabetic in my life, so yeah, I didn't know. No,

Scott Benner 33:10
yeah, you don't you have no idea. You say nine days in the hospital after that? Yep, nine days. Okay. Do you have any idea what you're doing diabetes related by the time you leave even? One

Lara 33:24
night, I'm going to tell you this, because what no one told me anything about diabetes, they would come in, they would give me when I would eat, they would give me a shot of insulin with my meal, they would give me that basic bar at night. But they didn't explain to me like how much or what would happen or whatever. And I remember one night not knowing, not knowing anything, and I didn't feel well. And if you know me, you have to I have to be near death to press that nurse call button because I just can't stand it. And it was in the middle of the night and I thought I'm gonna annoy all these people. At this point. I was in a four bedroom. And I was sweating and shaking. And I felt like I was running out of time. I press the call button. And of course, I had a low blood sugar. But I didn't know this was gonna happen to me. They didn't tell me. They said oh, you have low blood sugar. drink this juice. Okay, but then they told me this would keep happening either.

Scott Benner 34:26
You just thought like, oh, they probably just got it wrong. This one time this will never happened again. Yeah, they didn't

Lara 34:31
tell me this was going to be a regular almost daily occurrence for me.

Scott Benner 34:34
It's so difficult to be prepared for the first time. Anything happens and this is gonna sound disconnected for a second but I have a fairly healthy life overall. Like I'm a pretty robust person. We were cleaning the other day my wife and I did the very adult thing of cleaning our house one Saturday and just you know, spent the entire day cleaning stuff. And I'm a boy, so she's downstairs doing what she's doing. I just take bleach and cut it with water, put it in a spray bottle and just like douse everything, wipe it down and like it look, it's clean. And by the way, it works great, but I was cleaning in a corner. And this is gonna sound ridiculous. But there's a toilet in the corner and a corner in the corner. And so I sprayed down the toilet, and I sprayed down the floor. And then I walked away and came back. And I was in a room, obviously with a fan that was drawing the air up from the ground. And I turned back around to kind of go down onto my knees into the space to you know, wipe everything up and do everything I was going to do. And I think between the ceiling fan running and how much I had sprayed, I just bent down and took in a bunch of bleach in through like a brown. And I felt it hit the back of my throat and then started going down by a sock. Like I don't know how air works, but it was going down through my chest and as it was going down like I wasn't, I couldn't breathe. And I've never been in that situation before. And so I'm wearing rubber gloves. I'm holding stuff of earphones in my ears, like you don't you mean like an eye. I'm like, ooh. And I'm like, Okay, I need to get like, I feel like I should drink something. It's the only thought I have. I stand up immediately should not run it out of my nose. My eyes are watering crazy. I'm coughing to try it. And I'm thinking of God upon coughing at least I'm breathing. And I'm coughing and coughing, and I'm trying to pull the gloves off because I don't have a cup and I'm going to I know I'm about to like just take water like Tom Hanks in one of those movies. And like throw it at my face and try to get some in my mouth. What was that one when he was on the island Castaway, then I'm like, and I'm gonna, like do that. Right? And but I I have the wherewithal to think I bleach on my gloves, I have to take the gloves off. But as I'm reaching for the gloves, I'm like, Oh, I'm gonna die. Like they I am gonna King die cleaning the goddamn toilet. That is literally what went through my head. I was like, son of a bitch. I'm quasi famous, this is gonna get around. And like so I'm like, I'm pulling on these gloves trying to get them off. I'm trying to get the water running. And as I reached for the water, I think water or milk, I forget is water bad? Is water gonna make it worse. And then I just had the thought I was like, whatever, I gotta clear it like so I just started like shoveling water at my face. I got one good breath. And I was like, help need help. So I start heading through the house to get to Kelly. And I'm like going down the stairs. I'm like, like hacking up like I felt like a lung was coming out. But we've been married forever. So she can ignores me all the time. So so like I'm coming down the stairs and I'm like, Cal Cal Cal. Help, Help Help. She's what's going on. And I'm like, all I want to say is you son of a bitch. Like what's going on? I'm dying. Look at me. Like i Great. I'm like, I'm like bah bah, bah. So now I'm like running through the kitchen getting trying to get a glass so I can force down as much liquid as I can in between breasts and having that real panic feeling like my brain is gonna shut off because I don't have enough oxygen. And I finally get it in and I'm standing there just dripping out of every hole on my face. And like just dying. And she's like, what's going on? And I was like, You were no help whatsoever. Oh, God, I was like, I was counting on you. And you just stared at me. But But my point in telling the story. Besides learning, let's be honest, it's funny. But besides, besides telling you for that story, I was thrust into a situation I'd never been in before around my health. And I barely held myself together. And I think I was in trouble. Like I was in real trouble. And then she got put into a situation she'd ever been in before. And she kind of like just froze. And so I'm picturing you a couple of days shy of learning that you know, all this just happened with my pancreas and all this other stuff. You get a low blood sugar. You must have been me standing at the sink. You must have been I'd write I don't know what is happening, or what I'm supposed to do. Yeah,

Lara 39:04
it never happened to me before in my life. And I wasn't expecting it didn't know it was a thing for me. And I didn't know how to deal with it. But drink this juice. Yeah, everything will be fine. Let

Scott Benner 39:18
me just say this, if more of you would click on the links for the advertisers, I could probably afford to hire a cleaner to come through once a month and do a deep cleaning on the bath.

Lara 39:27
I will share it all Yeah, I

Scott Benner 39:29
mean, you guys, we'd probably saved my life by supporting the advertisers better. I'm not a person who pays them things done around my house. Like I like even my neighbor's like somebody's cutting their lawn. I'm like, can you just cut your own lawn? And she's like, I'm 60 and I'm like, Just get out there and do it you'll be fine. I'm kidding. But I mean if the podcast got big enough I would get somebody to clean the bathroom just so you all know you could save my life by supporting the sponsors.

Lara 39:53
It's an important thing for

Scott Benner 39:55
me Lark because I obviously don't know enough to like dilute the bleach better before a Yeah. I basically learned Yeah, I basically atomized bleach and then like, sucked it up. So anyway, I'm an idiot. But anyway, okay, and by the way, what am I complaining to you? You've been cancer. So yeah, yeah, we haven't gotten to the the truly horrific part of your story yet. Okay, so your low blood sugar, they get you back up. Does that make you think not even like this could happen again? You're not even at that. Yeah, yeah.

Lara 40:31
Because I didn't know like, I honestly hadn't a clue because really, at this point, nothing had been explained to me. They just kept coming in given me insulin feeding me, which was a difficult thing for me to do. They're giving me insulin for meals that I don't know that I can eat. Yeah, yeah. So and then even checking blood sugars, they would come in poke my finger, but not really explaining. They would say this is good or whatever. I mean, I honestly didn't know I had on either. They gave me but they didn't come with enough lancets or strips to do anything with just one of the sample ones.

Scott Benner 41:13
1010 strips at it. Right?

Lara 41:15
Yeah, done. So I was just really relying upon the care that they were giving me and I figured by the time I was gonna go home, I would have been to a class of some sort. I don't know what how does this even work? Apparently

Scott Benner 41:32
not. Well, good job, fired

Lara 41:35
by my oncologist or my endocrinologist. So I, they had to find a new one for me, which they did. Thank God. It wasn't until my they're getting ready to send me home after this nine days in there. And I said, but I don't know. Like, what am I? What do I do? They still hadn't explained that to me. So the endocrinologist came in and said, Give yourself 35 units of weight basic Laura at night, four units of admelog for breakfast, and lunch and six units of admelog at dinner.

Scott Benner 42:13
Did they tell you to count like what they put on a sliding scale or tell you to have a certain amount of carbs or anything like that?

Lara 42:18
Just eat like a diabetic plate? Oh, so my dad's a type two diabetic. So my mom's like, Okay, well, you need to have like a little bit of carbs, lots of vegetables and some protein. So outside of that, I didn't know how to eat anything else. I didn't know that I could give myself more insulin, if I had a snack. I didn't know any of that. Until I found your podcast. No one taught me that.

Scott Benner 42:45
That's something. I wonder if people in the medical profession hear that and are just ashamed.

Lara 42:50
You know, they shouldn't be because it is such a huge thing. And it is something that can as you know, kill Yana second, or send you into DKA. If you're not careful with taking enough insulin at the right time,

Scott Benner 43:06
Rudel, I'm assuming you're struggling along with this because these meals were probably not properly covered by insulin at all. I mean, he who even knows if that was the right amount of basil for you. Right? So it was 35. I mean, may I ask how much you weigh? I was

Lara 43:22
much heavier at the time. Okay. But as you well know, cancer and all of this surgery and I the massive weight loss very quickly, then put me into a point where I was experiencing multiple lows through the night because I was having too much at that point. So I was I think at the end I was down to 21 units of basic larges

Scott Benner 43:47
gonna say yeah. Did you have any situation where somebody who you kind of knew saw you one day and was like, Oh, my God, Laura ozempic. And you were like, no cancer?

Lara 43:57
Pretty much. Yeah, I kept it all very quiet. Actually. I didn't tell anybody what was going on. Until Until I started chemo. Actually, I didn't let anyone in. I was so in such a terrible state of mind. I didn't let any other than my very close circle. No one knew what I was going through.

Scott Benner 44:18
Can you give me a little bit of color on why that was like, why did it seem important to you to keep it to yourself at first? It

Lara 44:24
seems silly now. But I felt like I was going to be judged for maybe having a bad lifestyle. Or, I don't know. I think it was just all so shocking for me to like, even just seeing the words out loud put me into a place where I didn't want to be Yeah. And it's made it all more realistic. And I wasn't prepared to answer people's questions because we'll I really didn't know what was going on at that point for myself and trying to explain it all. Oh, I just wasn't ready for it all. And then the end when I did tell everyone this support and outreach was astronomical. And I probably should have done it sooner. Yeah, your

Scott Benner 45:12
worry. Was you just imagined really? Yeah.

Lara 45:15
100% So when I left the hospital, I left the hospital with my one day Ziegler pen, and had to stop at the diabetes educator on the way home from the hospital, where she gave me a sample of the FreeStyle Libre, a little schooling on how to inject where to inject, May, and then I stopped at the pharmacy for my analog pens, which I didn't have needles, digestive enzymes, which is another something I have to take every day with everything I put in my mouth.

Scott Benner 45:55
Which ones do you use?

Lara 45:56
I use bio case. Okay.

Scott Benner 45:59
I use pure encapsulations. But I don't need it every time. But I obviously don't have the same issue you do. I might not even have an issue. I don't even know. I just know what helps. That's all it's important. Yeah, yeah. Honestly, like, I had a slice of pizza yesterday. And I put the pizza on the plate. And then I thought were those little pills popped to my mouth. I went with two because cheese in Greece. And boom, I swear to you, I don't know that I pizza, like any bloating or no bloating, no gas, no unpleasant trip to the bathroom, you know, hours or days later. Nothing like that. And it's all just from this little tiny freakin like thing. It's amazing. So but you need it because they took they took your pancreas which is a huge part in indigestion.

Lara 46:47
Yes. And, and with pancreatic enzymes. There is either it's a fine balance too little or too much have the same effect. And trying to find that happy medium. Sometimes it's just impossible. What's the effect? You get? Serious diarrhea.

Scott Benner 47:07
Yeah, that's what I thought. Too much or too little. Same. Same situation. Yeah, gotcha. Okay, which is fun. Really, really fun. Make you long for those oily stools.

Lara 47:22
I'll take that.

Scott Benner 47:25
Weird to draw your lines. Oh,

Lara 47:27
my life is full of gross mess. Let me tell you. What happens. You

Scott Benner 47:31
bring the inside outside. Yeah, yeah. Okay, so you've alluded to this a couple of times, but you really like me, I haven't let you dig into it. Because I'm in. I'm trying to be modest. But the podcast helped you with your diabetes care. Like, in totality. This is where you learned about it. Okay. 100%.

Lara 47:50
I taught, I took what they told me at the diabetes educator, I threw it out the window. I've only actually had one appointment with my endocrinologist. Then this all went down and managed myself and learned to be bold and brave with the insulin so that I wasn't getting the huge spikes that I had. But it was the episode where Jen name is Jen. She had a total pancreatectomy as well. She was actually my gateway in the Google search for finding like people like me. And that's how I found it and haven't stopped listening. Since. Let

Scott Benner 48:32
me tell you, I mentioned earlier that there's something I have to tell you, right. Yesterday, I mean, I have a fairly robust Facebook group. And I forget I posted something yesterday and someone, a lot of times people use my threads just to find me, which is smart. Because tagging me at this point is it's difficult. I have trouble seeing all my tags. She just asks out of nowhere. Have you ever had somebody on with T three C. And I thought I definitely have like I thought of Jen right away. But what but then what I thought was, and I'm about to sit down with somebody who I think has it because this was like literally like two hours ago that I saw this post. And I thought I had looked at my I did. I did brush my eyes over my calendar this morning. Like as I was getting ready to sit down to do this. And so I'm like sitting here answering messages and at the same time setting up the file for you. And I'm basically I opened up my calendar to like put your name in the file. And I saw it and then what struck me was it said, What's your connection to diabetes? And it said other and I was like other what does that mean? And I scrolled and then I saw, I am a pancreatic cancer survivor. And then I saw all your notes and I was like, huh, and so then I finished responding to the person online. I said, and ironically, I'm interviewing someone today. Like who has that be like you know who has this situation? And that's incredibly odd because people do not ask me about it with any frequency. I mean, is that really insane? I thought so. Yeah. So okay, so you found Jan's which is hers is just called type three see right?

Lara 50:09
I think it says Jen has no pancreas.

Scott Benner 50:13
Oh yeah, I do name things like a four year old it's not my fault. I was not I was not well educated. I don't have a lot of big words at my disposal. Let's see. Yeah, let me see if I can find it. I'll tell people what episode it is. Okay, what do we got here? Pre Owned pancreas, owner of a useless pancreas, to artificial pancreas studies. You too can build an artificial pancreas Kelly's bionic pancreas? I was that not it? Was pancreas not Lord in the title. I started rolling. Jen had a pancreatectomy. Episode 279. There it is, if you want to hear that, oh, that was years ago. Oh my god. I've been doing this forever about that. 2019 Okay, well, that was about time we had somebody else on to share their story. So that's, that's really great of you to do. You mentioned before we started recording today that this is out of your wheelhouse, like being on the podcast, but you just want to help other people?

Lara 51:14
I do I have an innate desire to help people. It's just who I am. And I think that with this platform, and the things that I've gone through, there is a lot of help or support or hope or whatever can be offered. And for people that are going through this. That is everything. So

Scott Benner 51:38
once the surgery is done, and you kind of you know, you find the podcast and you figure out how to take care of your blood sugars and everything, how what's the length of time it's been from? Well, I guess first from the surgery, how long it's March 2021 was the surgery. Is that right?

Lara 51:53
It was March 2020 to 2022 Excuse

Scott Benner 51:57
me. Okay, so that's a year in more than a half ago. Yeah. For the surgery. And you did the six months of chemo. I did at the end of chemo. rang the bell. They told you you were clean the whole thing. The

Lara 52:14
whole nine yards. Yep, totally clean scans were clean. There was no sign of cancer and because I didn't do my research and they stayed off the Google I didn't realize that this is something that recurs even like they told me my margins were clear. Everything was good there. Everything they took 32 lymph nodes as well. They were all clear. So after the six months of really strong chemo, which also that chemo I will tell you is infused in sugar water over 46 hours. Which is good for diabetic

Scott Benner 52:55
Bolus for chemo. Bolus

Lara 52:57
chemo and they said keep you're trying to keep your sugar's at 10. Okay, well 16 to 22 was the average over those three days of chemo.

Scott Benner 53:09
Did you get the bone pain? After chemo? Yeah. Did anything help it?

Lara 53:17
I take like a Tylenol three. Mostly it bothers me at nighttime. It gives me restless legs and the bone pain in my legs is is pretty bad. So codeine Tylenol, codeine helps with

Scott Benner 53:30
that. Did they give you anything for the Restless Leg besides the coding?

Lara 53:34
No. And I've had restless legs for years off and on but it just gets exacerbated like crazy on chemo nights. It makes chemo nights are impossible to sleep just from the jiggly legs and the pain.

Scott Benner 53:47
There's a medicine that helped my mom with legs. I'll ask my brothers and see if I can get you an answer. Cool. Oh, shit. Laura. I'm sorry. Yeah. So I'm sorry. So you did the chemo. And it was really aggressive and you're clean margins, but you didn't know that it has a likelihood of coming back. They didn't tell you.

Lara 54:09
They didn't tell me this. There was zero discussion of reoccurrence? Yeah,

Scott Benner 54:14
they told my mom like, this is an aggressive cancer you have but you know, it's, you know, it's here and your ovaries and we're gonna take all that out, like my mom got a whole hysterectomy. Right? So we're gonna take all that out and you're clean and blah, blah, blah. And, but then nobody really said anything about like, but it could come back and it was crazy because ovarian cancer eventually takes my mom but she didn't have ovaries anymore. So if you're a lay person you think that doesn't make sense. Like you don't I mean, like how could I have finger cancer if my fingers gone? But turns out you can. Right So are they tracking you? Did you get markers or symptoms? How did you know that there was a recurrence?

Lara 54:57
So in July I had my first scheduled follow up. So they were the plan for me was to do scans and bloodwork every six months for three years. And then yearly after that for two years. So July was my first six month follow up. And because of our beautiful free medical system here in Canada, my CT scan that should have occurred in July actually wasn't scheduled until the end of September. But I went for the bloodwork and they were tracking my see a 99 tumor marker. And when I got that result, because we can check those lab results on yourself. I was sitting at home that day, I had had this test done and my tumor marker came back at 18 123. And normal is under 27.

Scott Benner 55:56
And they gave you a scan, they couldn't find any masses, but they tell you we're gonna track the marker and we're gonna go back to chemo is that about the plan. So

Lara 56:04
they put, they put in a request to get the scan done in a stop manner. And I ended up having to pay for a private PET scan because I couldn't get one done in a timely manner here and I was gonna have to drive for hours to get it. And I don't know if you noticed that with a PET scan, you have to be off all insulin for six hours before a PET scan. And when you are insulin dependent, that that's a feat in itself. It has to be below 10 Your structures have to be below 10. But without insulin

Scott Benner 56:39
without insulin. What do you just starve yourself? Yes, yeah, pretty much.

Lara 56:45
So I did I did it. But I thought driving for hours do that. I wasn't gonna do it. So we paid to have a private PET scan done, which showed spread. So I have no pancreas. But the pancreatic cancer cells were showing on my liver, kidneys and lymph nodes. But there was three masses that they could see on my liver

Scott Benner 57:11
so they could see masses already. How long ago was this? This

Lara 57:15
was in July, four months ago? Yeah.

Scott Benner 57:20
Well, first of all, you're not nearly the only Canadian I know who can't get in for simple testing. And so there's an argument to be made like, yeah, healthcare is really expensive in America. But at the very least, if you're waving cash around, somebody will see you. Yes. You know, like, so. You know, I have insurance. There's someone to bill a we can get you in. But in Canada? Yeah. I think I know this to be true. From people's personal experiences. They basically, it's whoever is going to die first is at the top of the list. So yeah, great. So you could have a problem that isn't, you know, imminent. And you could you could end up waiting a year or more to get treatment for it. And that's not that's not uncommon, from what I understand. It's not uncommon at all. Yes, some provinces are apparently better than others. Were I guess, again, I should say province, but you don't know you sound like that. Right? It's just the idea. Oh, yeah, yeah. So you get put in that's, so they would have killed you. If you didn't pay for the PET scan. That's right. And you ran the risk of your sled dogs being picked up on the scan by mistake. So you had to go Yeah, right. Right. I understand what's going on up there. Don't you worry. And the bobbin will snowman and all the stuff you guys have? Yep. So oh my god. So yeah, like, let's really think about that for a second. If you would have waited on their schedule. All these masses are growing the entire time. That's right. There's no way you would have lit Yeah, when

Lara 58:47
I finally got in for my provincially paid for CT scan. It took 17 days for it to be read by a

Scott Benner 58:56
radiologist. Oh, that's not bad. Just 17 to

Lara 59:00
17 shows cancer but 17 days before it was read by a radiologist. Okay, I already knew that I had cancer because the PET scan told me this. And but and the blood blood work showed me this. But then the oncologist wouldn't go by my private PET scan and they were waiting for to see takedown results.

Scott Benner 59:23
It really they wouldn't look at the scan you had done. Note

Lara 59:27
we had to hand deliver the images and the reports to them for them to put in the file but they were waiting for the CT scan. We had to drive an hour to this facility, get a CD ROM disk or whatever

Scott Benner 59:42
I remember. Yeah,

Lara 59:45
old school, deliver it hand deliver it to the BC Cancer Center. Someone

Scott Benner 59:49
just had me fax something for an insurance thing. And I said, Am I sending it to 87 Like what are we doing? Yeah, I can't just send you a PDF and they're like, no, no, no, there's like Oh, why doesn't anyone ever stop and wonder why, like,

Lara 1:00:06
I asked these questions all the time. And

Scott Benner 1:00:09
by the way, at least, you know, a handful of years ago, Trudeau was at least handsome now, he's a little chubby. So you're not even getting anything out of that anymore. You know? Canada, I'm shaking my head to Canada and you got all that? Oh,

Lara 1:00:23
I am yeah, I'm shaking my head everyday to like what the actual

Scott Benner 1:00:28
also large so I'm sorry so this doesn't sound positive. So I mean, obviously chemo and and I guess you're getting infusions to shrink swell. Yeah, right.

Lara 1:00:38
I am. So I have opted for a few things. And I do have some positive. I do have some positivity to talk about because I am doing very, very well. So I have started on gym side of me and Abraxane combination chemo, which is different from the first chemo. They told me that the first time the cancer cells have already seen this drug, or these drugs, it was a four dose combination. And they're still here. So I opted to try something different, which is not the first line treatment. It's second line. So it is working well for me. My recent scans show that there is delineation there is shrinkage. There is no evidence in the kidneys any longer. Wow. The liver masses, the three of them, they are shrinking and delineated. So I'm also along with what I'm doing. The chemo I'm doing high dose vitamin C infusions and hyperthermia treatments along with a million supplements through a naturopath.

Scott Benner 1:01:47
Which things are you doing cold plunge you just walking outside? I'm

Lara 1:01:51
actually the hyperthermia is old plunging, although I have considered it. haven't done it yet. I'm a little bit of a chicken.

Scott Benner 1:02:02
there's anything left to be afraid of. Yeah,

Lara 1:02:06
the hyperthermia is where they heat the tumor. So tumors cancer can't live. Anything over 40 degrees.

Scott Benner 1:02:13
Oh, like you said hyper, not hypo. I'm sorry.

Lara 1:02:17
That's okay. So yeah, hyperthermia, so I it's targeted treatment. So I lay in this water bed type thing. And then they have a panel that goes over top of you. And it sends heat up and down. So it heats the tumors, which then help the die off. So you do that a day after you do chemo. And then the day after that. So two days in a row, along with high dose vitamin C infusions by IV, and

Scott Benner 1:02:45
this is being provided by Canada or you're no longer paying for this yourself, right?

Lara 1:02:52
Yeah, it's $655 for one treatment.

Scott Benner 1:02:58
Jesus, so I did. Wondering when you said the tumors were shrinking, it made me cry. You got me. Thank

Lara 1:03:05
you. So I've been told that 1/3 of pancreatic cancer patients don't respond to treatment. 1/3 Respond moderately 1/3 respond. Well, I am in the third of that third that are responding exceptionally well.

Scott Benner 1:03:23
Good for you. That's lovely. And I have a I'm determined well, and maybe I have an answer for you. My brother sent me the answer. So roping the role, but it's commonly known as Requip, and it's a Parkinson's and restless leg drug. So our E qu, IP.

Lara 1:03:45
Okay, I'm gonna look into that. Ask about that. Because it's burrito.

Scott Benner 1:03:50
We tried a number of different things to help my mom My mom was like, it's doing some like drugs at the, you know, for the for the restless leg in the bone pain at one point, and we just kept pushing and pushing and Requip was one of the things that actually helped her.

Lara 1:04:03
Cool, that's good to know. Like to hear that, meanwhile,

Scott Benner 1:04:07
you're gonna have to call a doctor, then they'll return your call in 17 days. And then you'll mention that you heard on a podcast, they'll say, I'm sorry, we have to do our own testing. And then they'll give you an appointment for nine years from now and your legs just stop shaking about the time that you die of natural causes. And you're 90 So that'll be perfect. Yeah. Oh, you

Lara 1:04:26
got this Canadian medical system down, Pat,

Scott Benner 1:04:28
but it's free. Right. You know why? It's not worth any money. Yeah, yeah. You shouldn't live here because people still bring up Canada. They're like, Oh, it's free in Canada. I'm like, Have you ever spoken to a Canadian?

Lara 1:04:45
Oh, yeah. Americans, especially with pancreatic cancer are so far ahead of the game and standards of care. It's unbelievable the things that can happen down there in these big medical centers. If I was rich man, I would be down there and I'd be getting a nanoknife surgery and you name it, I would get it all.

Scott Benner 1:05:07
I mean, there's no listen, there's no doubt it varying degrees of, you know, everything that the luck of the draw of where you're born and how much money is in somebody's pocket is a lot to do with the kind of care you got. And you can, you know, whine and complain all you want that it's unfair, but that's how the world works. And it's what it is. So that's really a self advocate, advocate. That's

Lara 1:05:31
all you can do to keep

Scott Benner 1:05:32
arguing that's for sure. I have found recently Jenny and I are doing a series that is aimed at doctors, I keep being upset by the word advocate. Because I know what the intention of it doesn't exactly match the reality of it. Like people are like, you have to advocate for yourself, which means like, which should mean what, like, you know, don't you're asking for things you should just have anyway. And that they should give you an egg. So you're telling me like, I haven't talked you into doing your job more completely? Like that, like, I need to understand what I need medically or else it won't happen. Yep. And then by the way, when I bring it up, you're gonna yell at me and tell me not to look at the internet? How the hell do you want me to understand this, that you're telling me? You either know and won't do it? Or don't know? Either way? I'm not comforted by that answer. And so I come to you and push you to do more. But I need information about what that means. So I go to the internet. So I turn to you and I go, Hey, look, I read online, you read online? Like, wait, what? Yeah, I don't know. It's upsetting. Seriously, the word just keeps pissing me off, because I don't think it should have it shouldn't exist. You don't I mean,

Lara 1:06:44
it's you shouldn't have to, I actually have to oncologists, one that my one that I started with, and the one that I was really referred back to. And apparently he's very brilliant. But trying to have a conversation with him. Like, I'm very real. I like to ask questions. Unless he's read it in a textbook or it comes out of a textbook, he can't have an off the cuff conversation about anything. So I have found a second oncologist who is teaming up with him, that's my real talk guy. And he I can ask him stuff I, he's the one who gives me the positivity and the good notes and the and the high fives, whereas the other one basically looks at me and says, Well, we can't cure you. We're just prolonging your life. And this is how it's going to be. And this other guy's like, we're gonna get you into some clinical trials. And I've talked to this other specialist. So the help is there. Unfortunately, you really do have to look for it yourself. Yeah,

Scott Benner 1:07:44
no, that's exactly right. And that advice, and experience clearly translates back to managing diabetes. And, you know, like, if people are like, Oh, God, he's talking about cancers and diabetes podcasts, what are we doing? It's all very specific to just helping yourself. If you take what someone tells you, you are very frequently not going to end up well. Like, you know, I don't know if you've heard me talk about this on the podcast, and I am going to try to get through this real quickly. My mom only got the surgery to remove her cancer, because my neighbor's son grew up to be a surgeon, and he went to medical school with a girl who eventually ended up in OB oncology. And so I could ask my neighbor, if it was cool if I texted his son, when I texted his son, I said, Is there any chance you know, somebody that can be helpful with this because the oncologist my mom has seen, will not help her. It he was talking about like just hospice and you know, follow up. My mom got two more years. And instead, he was just going to manage her into the ground over the idea that he, he said, I'm not going to kill your mom and surgery, which my neighbor's son told me translates to pay his hospital, keep score. And if someone dies in his surgery, his score goes down. And I was like, Are you serious? That's the important stuff. Right? Right. And so I'm like, Okay, so he's like, don't worry. I know a girl from med school. So he calls his girl. That girl is like, oh, yeah, I work for this guy. He's amazing. And two days later, my mom and I are sitting in an appointment and the guy is scheduling her surgery. Amazing with my neighbor's kid grows up and does something different. My mom dies two years earlier. That is not an over exaggeration. And that's not acceptable. Yeah. Is that how this is all supposed to work? Like, right? I'm lucky because my I don't know. That's ridiculous. By the way, the guy on the other sides kid is an engineer. So I guess good thing I bought on this side of the street, like you know, do you mean like, how was it that random? Ridiculous on TV? You guys are right now like Scott, one of your neighbors kids is an engineer, the other one's a surgeon and yours Your son's got a quantitative econ degree where the hell do you live? I'm in a castle. Okay. Yeah, the castle. Yeah, the freakin point is what the hell? Yeah,

Lara 1:10:03
I have thought my way through everything I thought I have thought a thought I thought for myself and even when it comes down to diabetic technology like I, they made me wait a year before I could get the Omni pod. I asked to switch to the ducks calm like, those are all things that I took control over myself and and forced the issue because they would have just let me keep going. Status Quo and I know there's better.

Scott Benner 1:10:32
Yeah, listen, people die, okay. And some people don't have great care. And that's a fact of life. But what you need to understand is that the people you're talking to, they try very hard to see you as a person. But honestly, you're a drop in a stream. Yep. And when you look at a stream, you don't see droplets of water, you see water rushing by. And so if you want to be treated like a special drop, you need to take care of yourself, because everyone else is just at work doing their best. You know what I mean? Like I listen, if you have a really nice car, and you take it in for new tires, and it gets scratched later, they didn't see your really nice car and think like, oh my god, it's a Mercedes, I should try harder. They got 50 cars, they got to change tires on today. That's that. And this, this, whether you want to hear it or not medicines exactly the same way. It's just like, it's not that they're bad people. They're not bad people. They're fantastic people, they went to college for 10 goddamn years so they can figure out how to get inside you and take out your pancreas without killing you. I mean, that's amazing. You know what I mean? Like, God bless them. And thank you. But the system? Yep, the process is where if you're not, if you're not on top of it, then somebody else is like so. You know, I grew up around here, so I'm more accustomed to killer be killed lifestyle. Because that's just, I mean, if for you guys that live in the south, and everybody's like, Oh, I'm gonna go to lunch and two hours later, I'll do it like you would, you know, that doesn't happen here. Like, you're out there trying to get ahead constantly. You know what I mean? Like, you're not just climbing a ladder, you're also kicking with your foot as you're going up making sure nobody's following you. And and that is not a good way to live. This wasn't my point. But when you have that, that inside of you, it helps with this other stuff. Like if you've ever listened to the podcast, and they're like, how did Scott get that first thought or how did like, I would never accept anything less. That's how

Lara 1:12:29
I'm that's the thing. You don't have to you don't have to accept anything, just need

Scott Benner 1:12:34
to know what to do. And often people don't have the knowledge of like, where to go next? Or who to speak to or like, you know, even if you have all this person vinegar, like where do I point it? Exactly? Yeah, you know, absolutely. Just, I can't say that. It's, it's just so true. It just, it just really is, you know, I just happen to be a person who won't, I won't accept that. And I will reset the hill all day on every day. So like, you don't want to, like get into a thing with me. I won't give up. You know, and but I have people in my family. My mom was like, well, they said they can't do anything. And I was like, no, no, my mom like that's for other people. We're gonna work this out, you know? And so it's me too. Yeah. Good for you. It's why you're here. Yeah,

Lara 1:13:20
I'm already defying the odds with this timeframe. So

Scott Benner 1:13:23
keep going? Yeah, good for you. And when does your daughter graduate? Did you say she

Lara 1:13:30
graduates this year? So her grad will be in June of this year?

Scott Benner 1:13:33
Can I ask a hard question? Yes. She's young. So obviously, you and your husband have had private conversations. But when do you? When do you bring your your child into it? And say, look, mommy's fighting. We're doing all these things. This is what's going right. But we should have a conversation about the things I haven't said to you yet that you might need to know, especially a person like you who knows the value of talking to their mother even in their mid 40s. So have you done that? Are you thinking about it? Yeah,

Lara 1:14:05
that's that's the hard one for me, because and this is where I'll cry. Though, those conversations do happen. And we're pretty real about things around here. And there's a few things that I'm working on for her so that she has some things for from me, after I'm not here should something terrible happened to me in an untimely manner? Well, I'm not ready. But we do have the real talk about about those things. And unfortunately, that brings forward a lot of emotion and and for a 17 or should be 17. This month. It's really hard to regulate those emotions around those things. So we're trying to learn to be patient and graceful with each other, giving each other grace and space and time But there's definitely some some work still to be done in that regards with her and the family. But at this point I'm focusing on doing well. Ah, it consumes me

Scott Benner 1:15:18
Of course, right? I mean, because what do you what do you start thinking about? Something you want to say to her on her wedding day? Or if she has a baby, like that kind of stuff, right? Yeah,

Lara 1:15:27
exactly that. And I saw I saw in one of the feeds on Facebook, it was a going away to college like, photo album with notes and gift cards and that kind of thing for spare specific days along the way. And I was kind of working on that, or one page would have like, a photograph and then a little note from me and and go get a manicure or buy someone a coffee or something like that. So I'm focusing on on those kinds of things and then preparing for the eventualities. Should I not be there at first, I wasn't sure I was going to be here for her graduation, but I'm pretty confused. I'm pretty sure that that's going to be a Okay, given how things are going.

Scott Benner 1:16:12
That's amazing.

Lara 1:16:13
But beyond that, I don't know. Yeah,

Scott Benner 1:16:16
I saw these two girls on Tiktok. Maybe. And they're not not that old. They're they they felt to me, like between 19. And like 22 like that, that age their sisters, right. And I guess they lost their mom to cancer. And they get together once in a while and tell their mom into a tick tock video, all the things that that that they you're thinking it's going to be something sweet. They tell them all that they tell their mom all the things they've screwed up or didn't tell her when she was alive or something like that. It's pretty hilarious. And I love unburden themselves to their mother through Tiktok. Their their mother has passed. And at one point, the great one of the girls just starts cackling laughing and she goes, I drove my car for a year without insurance. I didn't know you needed it like and she's just like laughing. And she's like, I think they get on. They're like, Mom, here's all the things we've done since you're gone, that I know you'd be disappointed by and they just start rattling off stuff. It's very fun kind of love that. Yeah, it's very funny, actually. And it made me feel good for them. Because they were really like, together. Just they were laughing heartily. Like they, they, they were remembering their mom in a really lovely way. And at the same time, I think there was some, like, child, like, Hey, I screwed a couple things up. And I need to tell somebody, like it was really interesting. So but again, we're not going to think about that for you know, but it would be I mean, I don't know how I call myself good at this and don't ask you that question. So I appreciate you answering

Lara 1:17:47
no, seriously. Yeah, no, it's it's the real, it's the real talk about this stuff. I mean, there's so many different layers, and, and so many things to think about and plans to make both good and bad. But I think in actuality, everybody needs to be prepared for that, because life changes in a second.

Scott Benner 1:18:08
Yeah. And you know, what else to like, I could get all granola here and say something, and it'll sound like both, but it's actually true. Having the idea, like, we all live with the idea generally, that we're going to live forever, right? You know, like, we all feel like, well, we'll live in our 80s. And, you know, by the time I go, I'll be paying on myself, and I won't care anymore. Or I say stupid stuff. Like, I'm gonna like, I can't wait to like pinch nurses in a nursing home, because nobody will say anything. Like, like, like, I want to get to that age, you know? Yeah. But the truth is, is that there, there would be value in knowing your expiration date. Because, you know, it's hard to think about, but you know, even for me, like my son's not married, if I was gonna get hit by a car tomorrow, I'd spend the rest of today writing things down to my children and my wife and letting them know what I want. I want them to know, but I don't know that. So instead, if I get whacked tomorrow by a car, or if, hey, let's be more realistic learner. What if I tried to clean the skin toilet and almost killed myself? Okay, and so like, what if I have a terrible toilet cleaning accident? And I'm dead? And I'd never by the way, do you think my kids would care about my advice? If that's how I die? Probably not. What do we listen to this guy for? killed himself with a spray bottle? Oh, anyway, I would I would have the wherewithal to do some of the things that you're thinking about. And, you know, it's not a thing you want to think about happening. But if it's going to happen, then isn't it a blessing of sorts to know and be able to prepare? And not a blessing for well, you know what I was gonna say not a blessing for you, but maybe because you get to live through those emotions as hard as they are. But then, you know, 510 years from now, your daughter gets the have your thoughts with her, you know, yeah. And so I don't know there's an argument for me. Yeah, yeah, there's an argument to be made like you're what you're trying to do. If you're trying to complete your contract as a parent, even if you're not going to be able to stay for the entire employment base,

Lara 1:20:07
that's right. Yeah. Yep. That's a good way to look at it.

Scott Benner 1:20:10
Of course it is. It's easy to say, of course, for me, as I do not currently have cancer, but for you, I just think is the person talking to you and listening to you? That makes sense to me. Yeah. So yeah, well, you have such a good attitude. Can I ask that my last question is, how are you maintaining this good attitude? Well, are you on the Canadian weed? Is that what's going on? No, I,

Lara 1:20:33
I think if you asked me before, I was quite a very pessimistic person. But I quickly learned that this is not a time for pessimism, because I am just simply not ready. And I know that I subscribe now to the thoughts that what you put out there, you be specific about you, you keep your attitude positive, even when it's not some days, I fake it. And some days, I don't, but I have an immense support system. I have so much support from family and friends. That has helped a great deal. And I think honestly, it's just, it's just had, I've had to take a mind switch and change. I had to Yeah, otherwise I wasn't going to be getting out of bed every day. And I wasn't going to be putting in the effort to get dressed. And I was very in those early stages, I realized that I was gonna go downhill very, very quickly if I if I didn't turn that around. So I just I work. It's something I work at every day. And I try to keep myself out of the news and and surround myself with positive stories.

Scott Benner 1:21:49
Yeah, I bet you cancer really makes you stop caring about global warming pretty quick. Pretty quick. Yeah, you're like, who are they gonna vote it and you're like, don't care?

Lara 1:21:59
What's going on in the world? I really don't know situations.

Scott Benner 1:22:01
Yeah. Myself. Yeah, my situation just changed. I don't care what you do. That's fine. Oh, you discovered a new plant? Did you? Don't care? Well, me, I know you came on to help other people. But I'm going to end by thanking you for doing something kind for me, which you don't know that you did. To know that. I did something that helped you. With it felt very good for me, and really did well. And you're, you're nice to say that. And I'm not unaware of the reach and the impact of the podcast. But for some reason, this coupled not for some reason for pretty obvious reasons. That knowledge coupled with you also struggling with cancer. And what as recently, you know, transpired with my mom, it, you know, because there's part of me that thinks I didn't help my mom enough. And I know that's not to trust me, like, intellectually, I understand that's not true. But Emotionally, it feels like I could have made a couple of better decisions along the way or to zig when we sagged or something like that. Or, you know, I was listening to this thing the other day, I learned about this supplement that helps with your blood pressure. And my mom couldn't take her infusions after chemo because her blood pressure was too high. And I thought, Oh, I wonder if this supplement would have brought her blood pressure down. And then she could have kept taking the the infusions that were going to keep away the ovarian cancer and would she have lived longer? And like that's a really unreasonable thing to think so I don't consciously think it I want to be clear, like I'm not sitting around beating myself up about that. Yeah, but emotionally, it hurts. And when you said what you said, you you emotionally made me feel better. I thought, like, oh, this lady's has this struggle. And I made this thing and it made it better for like, it didn't fix it, but it made it better. And anyway, so you, you've made me feel good. I appreciate it.

Lara 1:23:57
I'm so glad. I really enjoy the podcast. I shared it with others. I don't know. I think there's value in it for a lot of

Scott Benner 1:24:08
people. Yep. I also defy other people to make a 90 minute podcast about pancreatic cancer, where you laugh and curse as much as we did. I thought we had a good time. We did. Yeah, I did. I did enjoy it. Well, thank you so much for doing this. If you hold on for just one second, I like to talk to you after we're done recording.

Lara 1:24:24
Yeah, you bet.

Scott Benner 1:24:33
Thanks so much to Laura for coming on the show and sharing her story with us. A huge thanks to Dexcom for supporting the podcast and for sponsoring this episode dexcom.com/juicebox Go get yourself a Dexcom g7 right now using my link. A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com Ford slash G spox you spell that? G VOKEGLUC AG o n.com forward slash juicebox

if you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox 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 Juicebox Podcast type one diabetes on Facebook. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#1108 Cold Wind: Healthcare Whistleblower E.R. Nurse

Anonymous female E.R. nurse shares stories that will blow your mind. Her voice and name have been changed to protect her identity.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 1108 of the Juicebox Podcast

Welcome back everyone the cold wind is gonna blow today. This time, an anonymous ER nurse is going to share her stories about working in a small local hospital. Each of these cold wind episodes has been eye opening and somewhat disappointing. This one's not going to be any different. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox 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 Juicebox Podcast type one diabetes on Facebook. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juice box

this episode of The Juicebox Podcast is sponsored by us med U S med.com/juice box or call 888721151 for us med is where my daughter gets her diabetes supplies from and you could to use the link or number to get your free benefit check and get started today with us MIT. Today's episode of The Juicebox Podcast is sponsored by Omni pod and the Omni pod five. Learn more and get started today at Omni pod.com/juicebox I

Anonymous Female Speaker 2:09
was diagnosed with type one diabetes in 1999. So I've been managing it for 24 years and I'm currently an emergency room nurse in a small local hospital.

Scott Benner 2:17
1999 How old were you then in 19? I was 1111 years old. Wow. And how old are you now? 35. Okay, type one. Do you have any other autoimmune issues?

Anonymous Female Speaker 2:31
Before I was diagnosed? I was actually being seen yearly by endocrinologist I have vitiligo and also hypothyroidism.

Scott Benner 2:40
Hypothyroidism you take Synthroid.

Anonymous Female Speaker 2:42
Yes, yep. I think I started taking that when I was like six. So started early.

Scott Benner 2:48
Does that run in your family? It does. Okay. Is there any other type one in your family? Um,

Anonymous Female Speaker 2:53
so my dad was actually diagnosed in his 50s. So just about 10 years ago, your

Scott Benner 2:57
dad, your dad after he? Was your dad diagnosed after you? Yeah, look at that. Is 50. Does he have any other autoimmune? He has vitiligo as well. But that's it. There's nothing to do for that. Am I right about that? Yeah. It's just

Anonymous Female Speaker 3:12
like your skin's discolored like it's, it's not really like an issue. You're just you sunburn a little more, you're more susceptible to skin cancer, but like, it just destroys your pigment cells, basically. So how much

Scott Benner 3:25
of your body would you say is vitiligo impacting?

Anonymous Female Speaker 3:29
Not much like my hands completely, and my legs from like my knees down? And that's about it?

Scott Benner 3:36
Is it something you even notice anymore? Not

Anonymous Female Speaker 3:39
really. I didn't know. So it's actually like progress as I've gotten older. And I've had a few doctors told me that that's not a thing. But like, if you look at pictures of me, as a child, like it is a thing because I had picnics, like right? When I was little, it was just my feet, and then part of my hands had no pigment and now none of my hands. And most of my legs, like the bottom part of my leg doesn't have pigment. So

Scott Benner 4:03
wow, that's interesting. Yeah, Synthroid, do you take T three as well, or just the T four? Just the T four. Okay. Alright, so, type one diabetes, since you were 11 years old, you're 35. Now that's a good long time to have it. You must know what you're doing with it. Yes. And have a good firm grasp of it. Now, tell me what it is you do for a living.

Anonymous Female Speaker 4:22
So I'm an emergency room nurse. I actually went into nursing eventually, I'd like to be a diabetes diabetes educator. I just started I'd like to also have like nursing skills. So right now I'm working in a hospital just so I can develop, like, all the nursing skills. And then eventually I'd like to transition to diabetes education.

Scott Benner 4:40
How long have you been a nurse? Three years. Were you doing something prior to that?

Anonymous Female Speaker 4:45
I Yeah. So I, I was trying to figure out what I wanted to be. So I worked in a lot of like treatment center settings with like juveniles. And then I worked while I was in nursing school. I worked at the oncology center. So

Scott Benner 4:57
yeah, I'm trying to figure out what I wouldn't be still. Yeah. I think I'm getting to it. I'm getting very close. Okay, so you you've been in nursing for just a handful of years. Yes. Okay. Now you're on the podcast, they obviously this is a whistleblower episode and your voice has been changed, which is something I'm trying to remember to bring up. Because the technology is so good at this point that somebody might listen to this and think I know who that is. But trust me, if you think you know, this voice, it's not the first thing you think it's just it's been so expertly changed that, that it just seems very natural and normal. But you're on today, because, you know, I'll be vague, but you know, you've listened to podcasts a little bit, but somebody you know, listens to it more, I kind of put the word out for this. And this person reached out to you and said, I think you'd be perfect for this. Why did they think you'd be perfect for this. So

Anonymous Female Speaker 5:48
her child has type one diabetes, we actually met through my hospitals Instagram page, they like featured me to November's ago for diabetes Awareness Month. So she's kind of befriended me. We've actually never met in person, but we talk a lot about diabetes. And one of the things I actually reached out to her for my project for my bachelor's in nursing, I did a presentation at my hospital about diabetes. And I really wanted to gear it towards it was for the nurses and for the management team. But I wanted to gear it towards like what type one diabetics want their healthcare providers to know, like, what kind of things that they find when their patients that like, is very concerning, and like hard for them to manage. And so I reached out to this friend, a lot through that project, I put a lot of time into the project more than I actually was required to for school, just because it is so important to me. And I reached out to her I had her because I so I, I am a diabetic, but I don't have a diabetic child. And so I wanted to know, like how parents feel. My mom, you know, as I, I was diagnosed in the early 2000s. Like, it's way different. Now we have Dexcom. So we have things that help, you know, parents be more hands on almost with their kids when they're not with them. Sure. So I wanted to know how these current moms have little kids with diabetes, feel when their kids are in the hospital, maybe they're not able to stay with them the whole time. And so I talked with her a lot through that. And then she would follow up with me about this presentation. So full disclosure, disclosure on this presentation. I presented it to our administration team and all the department like managers in the hospital, they were very involved asked a lot of questions, but they don't work hands on with these patients, their you know, management. When I presented it to our med surg nurses, no one paid attention. People were on their phones. The director and the assistant director, were in the back. They'd already heard it, but they were actually talking through my whole presentation. And I just felt like no one was really even paying attention. I actually just ended it early. Because I no one was listening. So and it was my personal time that I was doing this right. She reached out to me, we talked about that. And she I mean, we both were disappointed in the nurses reactions to this presentation. Yeah. And we just since then, I have like the things that I see at work following HIPAA, because I, you know, I don't tell her names and everything. But whenever I see some of these concerning things regarding mostly type one patients, I'll reach out to her because no one It feels to me like no one at my job cares. So I'll reach out to her and say, do you find this odd? And then she and I will discuss it and talk about how, how sad it is that these health care workers that we're trusting, with our family members with ourselves when we're not able to care for ourselves, don't seem to care to learn how to help us as type ones in the hospital setting. Do

Scott Benner 8:42
you think that they don't care? Or do you think that they just don't understand that it matters

Anonymous Female Speaker 8:47
both. So as well with this presentation, I was asked before it to talk with the ICU nurses about what they would like to know because they take care of these newly diagnosed type one patients. So they're, you know, the first real care team past the ER that's helping to educate these patients. So I went and chatted with a bunch of them, and they said, Oh, we already know everything. We don't need help. However, I did a little quiz during my presentation about general things that type ones do everyday carb counting, using the insulin pump adjusting insulin levels for high glucose, all those things. And they were also confused by the words I was using the it's obvious that they don't know everything. And I think like you said, I think they just don't understand like, how important it is that while because sometimes the patients aren't there for type one related hospital visits, they're there for other surgery or, you know, they have another problem that we're treating and type one is just one of their comorbidities. And they don't realize that like, we have to still manage it 24 hours a day whether, you know, we had our gallbladder removed or we had, you know, a knee operation. That's something that they should also be managing. And I just don't think that they understand that like, that's something if we're not alert and oriented and able to manage on our own that they need to be paying attention to it for us. Would

Scott Benner 10:10
you guess that they don't know what happens? Generally speaking, when a blood sugar gets too low, do you think do you think if I asked an ER nurse, you know, could you have a seizure from your blood sugar? Do you think they would know that,

Anonymous Female Speaker 10:20
um, some of them so I actually have two er stories about low blood sugar that I can share. But I think that they don't understand what it looks like and what it feels like. And honestly, the what could happen if it remains low, just because so in nursing school, at least at my school, we learn so many diseases and, you know, medical conditions that people have, we talked about diabetes for two hours, in my whole two years of nursing school. And it was everything that we learned about was about type two. And it wasn't differentiated that, hey, type two and type one are managed differently. Like, they're different treatments and everything. When

Scott Benner 11:01
someone says to you, I don't need this, I know what I'm doing. Do you think, what do they mean? They mean, I know how to take a blood sugar once while you're in the ER and write it down.

Anonymous Female Speaker 11:10
I think that's what they need. But I understand what diabetes is. And I know, like, it has to do with eating sugar and, you know, checking your blood sugar. And that's about like,

Scott Benner 11:20
if we gave them, like, even just the I don't know, the first 10 Questions from a CD test, you think it would just go right over their head? Probably yes. And so from your personal experience being there? Why do you think that is? Honestly,

Anonymous Female Speaker 11:36
there's so much as a nurse and as a health care professional that we are expected to know, I think, honestly, I might have too high of expectations for my co workers, because I am type one. And it is so important to me. Because if you ask me questions about a certain disease, like, I don't know, if you asked me about people that with celiac disease, all I know is they can't really we and you know, I don't know that much about it. So I guess it's, it's kind of me having too high of expectations, possibly for my coworkers, because I don't know everything about every disease that affects people's lives. However, at the same time, I do feel like I need to have high expectations. Because if you, you know, well, I actually don't know the answer. But I don't think you can die from celiacs. You know, like, as MC diamond hypoglycemia, like, yeah. So I think it also, you know, as we all know, diabetes affects every part of your body. It's not just your blood sugar and what you eat. Yeah. So if we allow these patients, you know, I've had patients handed off to me, I was a floor nurse and med surg before I went to the ER, I have patients handed off to me that their blood sugar's have been 300 for their full three days there. That's not okay. And that's damaging to their body. And, you know, their future they have us not managing their blood sugar's and I think we just don't understand the impact that those three days or 300, you know, are having on those patients. Yeah.

Scott Benner 13:02
And I'm not minimizing celiac, but thinking about it in an ER setting. First of all, you're not eating in an ER setting for them. Yeah, likely. And and secondly, if you were, if you were actually going to eat, you'd be conscious to be able to say, Hey, I can't eat this has got gluten in it. Exactly. That would sort of be the end of it. They'd be like, Oh, okay, you know, I mean, it's a dietary restriction as much as it is a medical issue. Yeah, I mean, what so what I see what you're saying. So you're trying to say, look, and I've made this point in the podcast number of times, I don't know everything about everything I've done. And, you know, if you came in here, and said, I have, you know, blank, blank, blank, I'd go I don't know anything about that. But I'm not in charge of your health either. So I want to give them credit for the idea that they didn't go to 1000 years of medical school and study each individual disease state for a year, right? Like, I get what the job is the job, it's a functional job with a medical, like side to it, you're doing tasks, right? doing tasks, you're doing noting, you're going back and forth between the doctor, you know, you're trained to give people injections or IVs are things like that, like, that's all part of the job. understanding deeply is not part of the job. But how many things are like, type one, you only mean like, how many things are emergent constantly, if you do it wrong. Is there I mean, do other things pop into your head when I say that, like what else falls into this category?

Anonymous Female Speaker 14:36
Nothing you think of that's why I had such a hard time finding a, you know, condition that I could compare to type one that I didn't know about because I'm like, There's nothing like this where like, life or death is, I mean, sounds dramatic, but life or death is every day like you said if you do it wrong, like I've had friends who have type one they have died from hypoglycemia in their sleep because, you know, who knows why they were asleep but they died. That's, that is literally life or death.

Scott Benner 15:02
So I asked the question sorted to make the point because you said like I can understand, but that they can't know everything. But I don't think we're asking them to know everything. I think we're asking them to understand insulin and diabetes. That's really it right? You're not asking for them to have a firm grasp. I mean, that would be ridiculous. We're not asking anybody to have a firm grasp or anything. This is an emergent situation, you made the point, you very well may not be able to help yourself. And already even speak up for yourself in that situation. And the public has this expectation that I get there. And these are the people like they can keep me safe when I can't help myself. Yep, yeah. My daughter was in the ER recently, two different stays. I've probably been asking this of a bunch of people, but it just makes the point. So well. Two different stays 30 by 36 hours apart. So 12 hours, 36 hours later back in the same ER for 12 hours. So in a 24 total hours day, can you guess how many times they checked her blood sugar?

Anonymous Female Speaker 16:00
I would guess when she got there. And then they also do labs that show like their glucose and probably that's it. Honestly,

Scott Benner 16:07
never is the is the answer. It showed it showed up on her. It showed up on her labs, but like no one in 12 hours walked into the room and said, Hey, let's check your blood sugar. Or what is your blood sugar? You're wearing a CGM? Can you tell me what your blood sugar it? Never once and she was on morphine while she was there. And 19 years old. No one ever checked on her.

Anonymous Female Speaker 16:27
Um, something I've seen with the CGM. So I mean, I obviously recognize what they are immediately. I've had multiple co workers that Oh, I don't trust those because the blood sugar's not accurate. And I'm like, Well, you're not even checking it. Like you said, you're not even checking your blood sugar. So you might as well glance at it, and it'll give you, you know, an idea of where it's at. It

Scott Benner 16:46
also, they think it's not accurate. Because they draw, they do a lab, they get that number, which is not the same thing that's being read read by the CGM. And yeah, it's

Anonymous Female Speaker 16:57
different. So it's reading your interstitial fluid, which is going to have a different sugar level than your blood. And also then a finger poke and a blood draw are different because it's different types of blood. That's something they should understand those nurses know that like, it's different area. So like, it's not even diabetes, just anatomy. But you should understand that the same blood like sugar concentration is not going to be in those three different types of fluids. Right,

Scott Benner 17:22
so you said you had a couple of stories about low blood sugars in the ER, can you tell me one of them? Today's episode of The Juicebox Podcast is sponsored by Omni pod. And before I tell you about Omni pod, the device, I'd like to tell you about Omni pod, that company I approached Omni pod in 2015 and ask them to buy an ad on a podcast that I hadn't even begun to make yet. Because the podcast didn't have any listeners, all I could promise them was that I was going to try to help people living with type one diabetes. And that was enough for Omni pod. They bought their first ad. And I use that money to support myself while I was growing the Juicebox Podcast. You might even say that Omni pod is the firm foundation of the Juicebox Podcast. And it's actually the firm foundation of how my daughter manages her type one diabetes every day. Omni pod.com/juicebox whether you want the Omni pod five, or the Omni pod dash using my link lets Omni pod know what a good decision they made in 2015 and continue to make to this day. Omni pod is easy to use, easy to fill, easy to wear. And I know that because my daughter has been wearing one every day since she was four years old, and she will be 20 this year. There is not enough time in an ad for me to tell you everything that I know about Omni pod. But please take a look. Omni pod.com/juice box. I think Omni pod could be a good friend to you. Just like it has been to my daughter and my family. diabetes comes with a lot of things to remember. So it's nice when someone takes something off of your plate. US med has done that for us. When it's time for art and supplies to be refreshed. We get an email rolls up in your inbox as high origin. This is your friendly reorder email from us med. You open up the email. It's a big button that says click here to reorder and you're done. Finally, somebody taking away a responsibility instead of adding one. US med has done that for us. An email arrives we click on a link and the next thing you know your products are at the front door. That simple. Us med.com/juice box or call 888-721-1514 I never have to wonder if Arden has enough supplies. I click on one link. I open up a box. I put the stuff in the drawer and we're done. US med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like liberi three, and the ducks calm G seven. They accept Medicare nationwide, over 800 private insurers. And all you have to do to get started is called 888-721-1514. Or go to my link us med.com/juicebox. Using that number or my link helps to support the production of the Juicebox. Podcast.

Anonymous Female Speaker 20:22
Yes, I have two I'll tell you both. You can pick which one do you want? Or using?

Scott Benner 20:27
Oh, no, I'm gonna, you can tell them both. I just wanted to start with one. That's perfect.

Anonymous Female Speaker 20:30
So I was a new ER nurse. We had this patient come in through the door. He was older. He was with his kids. He actually had type two diabetes. The story they gave us was we were at Costco walking around. We noticed dad wasn't with us. An employee came and found us. He was out in the parking lot wandering around and he fell. And he's acting confused. He's not like this, all these things. So I was the primary nurse. But like I said, I was a new nurse. So I had older nurses that were also helping me. So I'm asking, you know, does he act like this normally, because we do get older patients that are confused, and that's their baseline. They're like, Nope, he like I've never seen them like this. This is different for him. He has type two diabetes. I said Did he you know, what does he take the message that he takes insulin in the mornings? Okay. Did he eat today? They said he ate breakfast around seven. It's now 4pm. We didn't have lunch yet. So immediately, I'm like, hey, well, that's concerning that, you know, he managed it with insulin. He had a light breakfast this morning. He hasn't eaten since they haven't checked his blood sugar. We hadn't checked his blood sugar because he just came through the doors. He's sweaty. He's just mumbling just all these things. And so I said, Can we check his blood sugar, and I should back up. Those symptoms also are symptoms of a stroke which hypoglycemia can mimic stroke symptoms. So immediately, you know we aren't er strokes are very important that we get them diagnosed and treated as quickly as we can. So everyone in the room is, you know, stroke, this is a stroke, we're going to do a stroke workup. But here I am this new ER nurse, but this 24 year diabetic that said, Can we check his blood sugar? Can we you know, and I'm helping started IV I'm in the you know, in the thick of it. So like, I can't run, go get our glucometer and get it but I'm like asking other people to grab it. Everyone else was like, No, we gotta get him ready to go to CT. Fortunately, our house supervisor who's like a nurse, it's over the whole hospital. She came in, I said, Can you go grab the glucometer I'd like to check his blood sugar, which afterwards, I talked with my manager about this. And that's actually one of the first things we should be doing with a stroke workup is checking blood sugar because it can mimic a stroke, like hypoglycemia can look like a stroke. So she goes and gets it, I grab a finger stick because they're like Willingham way to CT, it's 25. So I turned to the doctor and I'm like, his blood sugar is 25. And so he goes, Hey, go grab, you know, somebody 50 All these things. So I asked the CT tech to wait a second so I can treat his blood sugar. And they say, No, we gotta get him to CT. And here I am this new nurse like, well, I don't want to, you know, harm this patient, if he is having a stroke, I don't want to delay this. Now, having been there almost two years, I would have said I don't care, we're stopping because I'm the nurse. And you know, this is my patient. And we need to treat this low blood sugar before we do anything else, or he's gonna die from that a bit. As a new nurse. I didn't want to, you know, fight with these people that have been there longer than me. And I even asked her charge nurse I said, Aren't Shouldn't we give him something before we go? And she said, No, we can do it when he comes back. And again, luckily, this house supervisor was standing there and she was all grab it for you. And I'll meet you in CT. So she grabs it, we go to CT, I give it to him before he takes us through all these things, we get back to the room and he's you know, maintaining appropriately talking with his family, not sweaty anymore, not weak, you know, all these things, because he had lobe ledger, not a stroke. And then the thing that bothers me a lot with healthcare, healthcare, and this is a different topic entirely. But now he gets charged with this huge stroke workup, where if we had just waited two minutes in the ER, and, you know, given the glucose and assess that this could be hyperglycemia not a stroke, you know, we could have maybe made some critical thinking judgments and, you know, tested for the, you know, done the Google's first and brought that up and then seeing if the symptoms are long anyway. Did you say the blood sugar was 2525 and I was finger poke? So

Scott Benner 24:27
you know, Ben, you said that out loud? Yeah, I

Anonymous Female Speaker 24:29
did. And everyone's like, Okay, let's go get a CT. And I was like, okay, 25 is bad. So I don't know. That's That's what I'm saying. Like, I feel like my expectations for them are too high. But that's something they should understand that that is entirely too low, like and dangerous for this man.

Scott Benner 24:48
What percentage of the people you work with are somebody you would trust yourself with?

Anonymous Female Speaker 24:53
None of them will. No one in my era would I trust to manage my diabetes? If I had needed my opinions out Sure, I needed my gallbladder out. Sure. But if I was, I've actually told my husband if I ever am in the ER, and I'm confused, like, actually, I say, you need to call my mom, because she's been helping me with this, you know, since I was 11. And I need someone to be with me the entire time, that's helped me with my diabetes, because I don't trust these people to do it.

Scott Benner 25:19
And you're talking about in an emergency situation, not saying like, you wouldn't invite people to your house. Right, right. In an emergency situation. There's no one there you would Yeah, doctors,

Anonymous Female Speaker 25:29
there's a few. So there's one doctor that if he was my doctor, I would be fine. He is actually, I can tell a million shares of Apple nominally, but he actually had a two year old kiddo that just wasn't acting right, all these things. So we did all these tests, did a workout for four hours, he had had his vaccinations two days before, and the doctor goes, you know, I'm gonna ask you to do something that you're not gonna want to do, but I need you to check his blood sugar. And me as a type one diabetic, I said, I would love to check his blood sugar. Because if it's that if we want to know, and I, it was like 500. So his vaccines had, essentially possibly caused him to go and you know, to have type one. And so he diagnosed that the only thing that his kid was doing that was weird, I would say is the parents were like, every once in a while, he does a weird little cough. And that's what they were concerned about. And but he this kid got diagnosed with type one within two days. I mean, you don't know when it starts, you know, but like, yeah, of course, it most likely was the vaccines that triggered it. And then so that doctor, I would definitely let him be my doctor. But

Scott Benner 26:30
he saw the oddness is maybe we should check a blood sugar. Yeah, because the high kids got an incredibly high blood sugar. And two years old, you said, Yep, two years old. Yeah. So there's not a lot of like, am I wrong? There's not a ton of like, testing you can do talking to them at age, right to figure out where they're at.

Anonymous Female Speaker 26:47
Yeah, and we rarely do lab work on little kids like that. Well, so we're not a pediatric hospital, we can treat pediatric kids but like, if they're sick, they have to go to our pediatric hospital. It's a couple towns over, okay. You know, we don't we try not to do blood draws, partly because we rarely do them. So like, you know, sometimes we have to poke these kids three or four times, you know, because our little on there squirmy. And it's just not our, like, forte that we're used to. So we haven't done labs on those can also because like, the complaint of the parents was kind of weird. Like, he just coughs every once in a while. And it's not even like a cough. It was like, he keeps doing this.

Scott Benner 27:24
And I'm like, kids do that. They didn't notice that he was altered at all. He

Anonymous Female Speaker 27:28
wasn't he was like he? I don't know, wasn't I mean, I guess with 500 He could have been but like, he just like was coughing weird. That was really the only thing we saw. I mean, we're not the parents. We don't know how he normally Yeah. But he was talking to us. I mean, as a two year old can and doing all the things that two year olds do that I kind of was like, okay, these parents are overreacting. And then luckily, this doctor was like, well, let's just check his blood sugar because I can't find anything wrong with him, like in my assessments and everything, because we did a chest X ray, because like, possibly, you know, pneumonia is making him do a weird cough, but not

Scott Benner 28:02
the case. Yeah. So if that's the situation for type ones in your ER, then type twos, if they don't come in specifically for something diabetes related, no one's gonna pay a lick of attention to that. Right. Right. So diet, nobody's going to offer advice, they wouldn't have advice to offer one way or the other. If I was in there, and I was struggling with my type two diabetes, there's no one in the ER that could set me on a good path.

Anonymous Female Speaker 28:26
Scott, there's no one in our hospital that does diabetes education. That's another issue I have with. Since I've worked there for three years, we had a diabetes educator, when I started, she worked part time, I actually started shadowing her and like I was transitioned to be her like backup, if she wasn't able to come in that time, she quit, she got a better job somewhere. And they just shut the diabetes Education Program down at our hospital. I talked to her chief nursing officer who's like, she's the CFO about that, because I was like, I'm concerned that literally no one here is doing diabetes education, like this is a major type one, type two, whatever, you know, whatever kind you have, this is a major illness that is affecting a huge population, you know, in our country, as like, we don't have anyone that's doing diabetes education for these patients. And then we do so like, you know, to me, the workaround, whatever it is, we have a doctors group that works with us that are like family practice doctors, that their offices down the street. And so like they technically Apparently our education group, so what she says she's like, well, when they get discharged, we send them to this primary care doctor to do their diabetes education, which I actually personally and as a nurse have an issue with primary care doctors being the diabetes manager because as I've said, we don't know you can't know everything about everything and if your primary care doctor, you know a little bit about everything, but you don't know enough about diabetes to manage a patient's diabetes like

Scott Benner 29:56
you just don't. You said it was a small hospitals this small All town. So we

Anonymous Female Speaker 30:01
are like a suburb of the capital of our state. It's a community hospital.

Scott Benner 30:08
So is your ER overwhelmed all the time or not particularly?

Anonymous Female Speaker 30:12
Not really, because the word trauma free, which was like, we can't take, like critical patients and like, we'll take them if they come through the doors. But if they're coming ambulance, you know, they don't come to us because we'll just transport them somewhere else, just because we don't have the extensive, you know, like treatment teams for them. Right? Our er is pretty full, like we're pretty busy. But like, we see like, 50 patients a day. So like, Okay, I was talking to my cousin who works in Minnesota somewhere that he works in the ER, they have 500 patients a day.

Scott Benner 30:44
Have you ever spoken to him about this, about the diabetes piece? This is any different? Yeah. Is it any different word they are in a larger hospital? But that's a good question. I will chat with you about that. So here's another question. So you're newer, right? You got this job? Here. You're seeing what you're seeing there are bigger hospitals close to you. Is it in your head to get to one of those bigger hospitals?

Anonymous Female Speaker 31:05
That's funny question. So tomorrow, I start I transferred to a hospital. Okay. That's

Scott Benner 31:09
not a funny question. My point I guess was going to be, you can't be in that place and watch that level of care, and then try to affect it, and then watch that not help anything and then stay, you have to go somewhere else and try again. Right,

Anonymous Female Speaker 31:21
exactly. Yeah. So I've talked to like I said, the CNO, multiple times. Two months ago, we had a sit down meeting about maybe, I mean, I said I would like to be it. But if not me, someone needs to be a diabetes educator at this hospital. Like it's not fair to our patients to I mean, what we do is we'll die we diagnosis history teacher, so I mean, he's old enough to be a teacher, but type one, six months ago, he was in our ICU for a week, guess how much diabetes education he got? Probably not because I talked to a couple of his nurses. And we're like, well, we didn't really know what to teach him.

Scott Benner 31:51
Yeah, they don't know what to do. They wouldn't know what to tell him. Yeah. Newly diagnosed type

Anonymous Female Speaker 31:56
one, I mean, adult, so he's like, what's this mean for the rest of my life? And like, we hardly taught him anything. I had him in the ER, I was his nurse on there. And so I basically did the, like, reassurance like, you know, you can live with type one, like, it's okay. It's gonna be a lot to learn, but like, you know, your life is, you're gonna, you know, you're gonna be okay. Because it's a scary diagnosis. But like, you can live with it. I've lived with it for 24 years, like, and so I didn't do a lot of teaching also, because you know, that first, the first time you're told to diabetes, like you're not ready to learn, like, okay, teach me everything I need to know, like, and

Scott Benner 32:28
so personalities are different. Yeah, it's their scenario. And so he went

Anonymous Female Speaker 32:32
out to the ICU, and we, in my opinion, like, failed him a lot. And then they, when they discharged, I told him in the ER said, if they tell you to go, I just talked about this, but to a primary care doctor, to help you learn about diabetes, I said, you need to call your insurance. Find an endocrinologist that specializes in type one, and you need to go see them. Because your primary care doctor could not teach you how to manage your type of diabetes. Not

Scott Benner 32:57
likely. I mean, there may be some that no, but not Yeah, not likely. Wow, this is I've been doing a number of these recordings. And so far, let me just say it's not an uplifting experience. Yeah. It's not surprising to me. But the level of ambivalence that you that you explained earlier, that part does surprise me. Like once it's thrown in your face, and you go and you're a nurse in an ER, and someone says to you, Hey, there's this thing. It's really important. Here's why it's really important. And you start flaking and not listening. That confuses me. I bet it confused the hell out of you, too. You probably thought you were like, I'm like really going to help everybody, right? Yeah. Yeah. Did that. Did you feel naive when it was over? Or did you feel let down, I

Anonymous Female Speaker 33:42
felt let down well, and so these are my peers, like I've been working with them for two years. And like they couldn't even listen to this thing that like, obviously, is very important to me, as a type one as a human like, and they couldn't even like there was one nurse, I got to give credit to her. She paid attention. And she asked a question at the end. She's the only one that interacted with me through that whole presentation. And the other thing that's shocking to me, people come in with their pumps, and their CGM. And the first thing that most nurses do and the doctors is take those off, we're not going to use those, we're going to manage your diabetes. As we discussed, we don't do that. We actually our hospital does have a policy that allows patients to wear their pump into where their CGM and to manage their own, as long as they're not there for like DKA or like something, you know, directly type one related. They can manage their own diabetes, all they have to do is write down what they did. Super easy. We're already doing that. And none of those nurses even knew that policy existed, which is very frustrating to me, because we have type one patients that shouldn't be allowed to manage their own diabetes, and they're not allowing that because they just don't care to learn it. It's in our intranet, like you can google type one diabetes is the first thing that comes up as this policy that allows them to use their own pump and use their own CGM. But

Scott Benner 35:02
people just immediately say take it off. Because the thing is the thing they don't know about. They

Anonymous Female Speaker 35:07
don't understand it. It's like in that time you need to do some what we don't understand scares us. Like, they don't they don't want the patient to be doing something that they don't understand. So they're like, well, just don't do it, which is to me scary. Actually, I have another story. When I worked med surg first, which is just inpatient, like general medicine. I entered, I worked three days in a row, or my first seven days, I was hearing other nurses give report about this patient. And they're like, well, she keeps giving herself insulin, she keeps doing this, this thing happened. And so on my third day, I heard them giving report and I said, I'm actually going to take that patient because she had the I had heard on type one, all this thing, all these things about her, I said, I actually will take that patient from you. And I'll just have an extra patient, like, don't worry about it. I'll take her. So I go talk to this patient. She's in her 50s. She's been diabetic, you know, 40 years. And she explains to me what, what happened to her. So she came in with her insulin pump on, they didn't notice she had an insulin pump on which is concerning to me, because they're hard to miss. And they should like we should be doing head to toe assessments on her patients every shift like I don't know how you miss it insulin pump anyway. So her pumps giving her insulin, the doctor orders are standard, which again, they ordered the same exact insulin treatment for type one and type two, which is very concerning to me, because

Scott Benner 36:29
it's different. What do you mean? I'm sorry, what do you mean, but what Institute we do a sliding

Anonymous Female Speaker 36:33
scale. So you take their blood sugar, depending so we have three different scales, but the general one, so we'll do Skill A, you take their blood sugar, it you they have a little like table at our Pyxis which is where the medications are dispense. That's okay, if the blood sugar is like 100 to 150 Don't give any insulin, if it's 150 to two, so is that normal sliding scale that when I was diagnosed, that's what I did. You know, if it's one, this is like low blood sugar correction scale, but so they we do not dose for food for type one diabetics in my hospital. There's no, like scale, there's no orders for like carb counting or like, ask the patient you know what their what they do at home, there's nothing we just we just chase blood sugars. That's the orders we get for type one or type two, that you just use a sliding scale, you check their blood sugar, you give them the amount of insulin that they need for that blood sugar. And that's it like you don't dose for the food. You don't. You don't do anything else. You just do the sliding scale. And we don't do like posts. We all checks like nothing like that. You just did a sliding scale. And then the next time you check the blood sugar, yes, I mean this Not really. But they asked the patient. Well, what have you been doing that made your blood sugar high, which drives me crazy, because it's us doing it to them. But anyway,

Scott Benner 37:48
I let you take care of my blood sugar if that's what made it Yeah, you guys did it. And so it's not so much about the expectation that some people just are going to be in the hospital because they're sick lead to begin with, and they don't know what they're doing. So they probably don't know what they're doing with their blood sugar. This is just a, we take this down to a you won't die from your diabetes if we do this. And that's all we care about. Nobody's trying to make you better make you educated make you healthier in the moment or healthier long term. There's no consideration around any of that in the ER. Yeah,

Anonymous Female Speaker 38:21
well, this is on the floor. So even inpatient. This lady was being treated like she was sent there for diabetes. She was there for something else. So like, we don't care about your diabetes, it's kind of the vibe they were getting. Yeah. And then also Oh, go ahead.

Scott Benner 38:34
I'm sorry, the food on the floor is garbage. Right is awful. Okay,

Anonymous Female Speaker 38:37
so another side story. I had a patient in DKA like, you know, this was in the ER, if they're not really supposed to eat like all these things, but she was like, adamant that she eat and so the doctors like whatever just ordered her diabetic tray. I called the kitchen myself. I said I need the for sure. Like a diabetic tray. Like it has to be diabetic. You know, a diabetic meal. They sent spaghetti or bread sick, putting like just normal putting and milk. And I was like cool. None of this is like technically what you know

Scott Benner 39:09
dieting, I fall back down and say hey, diabetic tray and they go no, that is one or is that

Anonymous Female Speaker 39:14
that's what we have tonight for the diabetic train.

Scott Benner 39:17
Pool is to the diabetic tray is pasta, putting bread and

Anonymous Female Speaker 39:23
milk. I was like, oh, okay, well, I don't know what to do with it. I actually went we have like a fridge for EMS partners that we sock with food. I went and took a salad out of it because I was like she can eat this like she's literally in DKA like she care how Yeah, that can be

Scott Benner 39:39
like 90 carbs. Yeah, just me roughly going over it my head real quickly. Yeah, like I was like, This is insane. So I got her salad. Not just not diabetic friendly. Not really friendly for your health in any way. She's

Anonymous Female Speaker 39:49
Exactly. Absolutely fantastic.

Scott Benner 39:52
Oh my gosh, is this upsetting to you? Does it make you feel like you're in the wrong line of work? Like how does it Make You Feel specifically,

Anonymous Female Speaker 40:01
honestly just kind of like, defeated because like I said, for the last three years I've really been advocating for more. I mean, my very first so as a new nurse, they do this program where you like, it's kind of like extra school, but it makes you better nurse. And then you have to do a project. So this is different than that project I talked about earlier, that was for my Bachelor's independent of my job. But for this job, you have to do a project and I did my project on meals for diabetics, and not even knowing that you know about that spaghetti train just about how blood and I had to present again, in front of a group of nurses. So how food affects our blood sugar, how you know, just all the things we do carb counting all that kind of stuff. And suddenly, so from the beginning of my nursing career, not even I mean, like I said, I went into nursing to eventually be an educator. But from the beginning of this career in the hospital, I've been vocal about diabetes, I've been vocal about diabetes management, like everyone there knows I have diabetes, like, I actually do have some nurses that that's a nurse, I told you that paid attention to my presentation, she's actually called me like when I'm off shift, and been like, I know you're not working, but can you please help me with this patient, they have a pump, and I just need to do this. And like, I'm like, please call me anytime you want. Because I would love to help that patient and you to, you know, have a better experience in the hospital. So there's a few that like, have listened, and that will come to me and ask questions. But the vast majority, like I says, a small hospital I know, almost every single inpatient nurse, the vast majority, in my opinion, don't care. And it's been really disheartening. For me like, I've been so vocal. And so like, if you haven't quite I mean, not that I know everything. But I know 24 years worth of things like that's a long time. It's longer than some of these nurses have been alive. Yeah, for sure. It's disheartening that like, I've been so vocal, and even to admin, that I'm like, Hey, we're failing our patients, because we're not, we don't have these tools for them. And like, just no one cares. Oh, I mentioned. So I met with our CFO two months ago, to talk about the need for a diabetes educator. I've heard nothing. She was very positive in the meeting. And they're like, Yeah, I agree. All this stuff, her brother house type ones, like she gets it. And at the same time, I'm not blaming her because it's a bigger organization than just her. Like, there's a lot of moving parts to like, get this approved, and all that stuff. But I haven't heard one word about it. And so as I was considering transfers, I'm just transferring, it's a sister hospital, but it's bigger, traveling to the ER there too. But as I was considering, like, Should I do this? I was like, Well, I don't want to let our CNO down. Because, you know, I've told her like, I would like this job. Like, I want to be the one that does this for a hospital. And then I was like, Well, how long has it been since I talked to her? It was in September, not to blame her, like I said, but I was like, I haven't even heard back in two months. Like, I don't owe this, this hospital and like my, you know, sitting around hoping that eventually they'll see that, like, we're not caring for our patients that have diabetes. And like, I can't, I don't, I can't owe them that. Like, I can't just wait and hope for something to change when it's not changing.

Scott Benner 43:03
So let me ask you this, if I put you in charge of the hospital, what do you think would immediately help the people with diabetes that come through there?

Anonymous Female Speaker 43:12
Well, okay, every newly diagnosed type one should have like, so I never when I got diagnosed, I never had an inpatient stay. So I don't know what it's like for most people that get diagnosed. But I would think that, you know, every few hours, there should be some new piece of education. That's just the basics of how to manage your diabetes every day, that you know, there is a dedicated person or a group of people is what I would have done, because I started thinking about after I talk to her, like what I would do to change diabetes education or hospital, right, I would have created like a task force of like, nurses that care and that want to learn about diabetes, that they could then so that there's at least you know, someone there every shift that has this base knowledge of it, they could go in every few hours, this patient because we don't want to overwhelm them. And, you know, do a six hour lecture for you know, one day, six hours long, but every few hours gonna be like, hey, now we're gonna talk about carb counting, now we're going to talk about, you know what to do on sick days. Now, we're going to talk about this and just have like, we don't even have like an education packet, we can hand them, like, go home and read this, like we don't even have like, it's, I don't even know what we have. It's we have nothing, nothing. It's just stuff we print off of like our, like, general information about what diabetes is. It's not anything like extensive and so I mean, that would be the first thing you could change just having someone in the hospital that knows at least enough to like help this patient to understand their new diagnosis. And then for those patients that aren't you know, new diagnosis that were like we talked about for their blood sugar's should not be two and three hundreds, their whole say type one, type two, it doesn't matter. And we're doing that to them. Like we're the ones that are supposed to Imagine their blood sugar. And we're not half the time the CNA goes in and takes it and like, when I was on the floor, they would like, tell me, but I was in the middle of something and I'm like, okay, like, what do you want me to do about that right now? But, and I, and at least I understood, like, Okay, I gotta fix that, like, I gotta address that, get them to insulin before the, you know, all that stuff. But for the most part, I think it goes in one ear out there that like, cool, thanks for doing that task, checking off that box. Like, I'll get to their beds when I get to it. Like,

Scott Benner 45:29
I have a question. It might be difficult, because I'm not asking you to tell me what you think people think. But I am asking you if you've heard people say, you know, something specifically. Okay. My question is, of the people who have directly said in front of you why they've become a nurse? What are the some of the answers? It mean? Is it I want to help people? Usually? Well, how can they say that? And then when it's their turn to help people go? Doesn't matter if I understand this or not? Yeah, I

Anonymous Female Speaker 46:00
don't know. I don't know how I should ask them that. But

Scott Benner 46:04
yeah, I don't think you should. I think that'll be that'll be a quick way to not having any friends at the hospital. Yeah, it just makes me wonder like, if, you know, I guess what I was wondering is if you ever stood around with somebody, they were like, I didn't want to be a nurse. But I was good at this or you don't I mean, like that kind of stuff. Or people really do start off thinking like big kind of pie in the sky grandiose, I want to help people. And then it becomes more about getting the tasks done than it does about doing those things in a healthier way. Is that basically what it is and other people have been on and talk to me about this. It's an emergency room, they only care about the emergency or therefore.

Anonymous Female Speaker 46:42
Right? Well, and even I don't know if I'm, I will say this on your podcast, but some nurses in the ER call themselves trauma horse. They liked the trauma. They liked the heart attacks, they liked the car accidents, like we don't get a lot of like gunshot victims in our yard because it's small, but like, they like feel like life or death, like trauma situations. But like we talked about before these I have another story about a guy that our one of our maintenance man had a blood sugar of 20 They didn't care about that. And I'm like, This is literally life or death this like, you know, in a couple minutes. His blood sugar's 20.

Scott Benner 47:15
Also, that's bill, we know him. Yeah. Yeah. So

Anonymous Female Speaker 47:19
he was fixing our lights and our nurse's station, the doctor notice he was like, acting kind of weird. I was actually walking into a patient room and I heard the doctor go, Hey, I was chicken changing them. Hey, Jake, are you doing okay? And I was like, that's weird. But I know this guy who's been in the ER a couple times because he's a newly diagnosed diabetic that hasn't had the education he needs or has diabetes. So he's been in there a couple times with hypoglycemia. And I was like, that's, that's weird. I'll check on him. When I come back out. I come back out the doctor and the other two nurses on shift are like holding him on this ladder. And they're like yelling for the other doctor and they're like all this up anyway. They they're like he's seizing on this ladder. He's having a seizure all this stuff and so I go grab a gurney I hit our like code blue bar and he's not dying but like we can't get this to underpin man off a ladder by ourselves. So a couple like another dot coms our security that comes all this stuff. I live in, I hit the button. I grabbed the gurney, I go over, I said, Hey, he has type one diabetes, and he's has a history of having low blood sugars at work, like, just FYI. So you get them off the ladder, we get them on the bed. We rollin back in the room, and they're like, Hey, does he have a seizure disorder, all this stuff like going over or something like, Hey, he has a Dexcom I know he has a Dexcom like, can we get his phone and this guy's awake? And he's like fighting us like, No, I'm fine. I just need to go back to work. But like he's not fighting. He looks terrible. Sure. Yeah. And like, he just you know, was convulsing on this letter. And I like can't get his phone. Like he has a Dexcom. And like, no one's this was literally last week. No one's like, I'm trying to tell the guy this guy, like, will see the guy on the ladder. Like we don't know. I mean, we don't know why right now. Like, we're just trying to help them figure this stuff out. But then the security guard comes in. And they're friends. And he's like, hey, you know what's going on talking to him? Like you just calm down, buddy. Like we're helping. I was up. As I look at our security guard. During his interview, I'm like, Hey, Sean, get his phone. He has his blood sugar on it. I need to know what it is. Because I had tried. Like, I didn't wanna just like reach in this man's pocket, you know, and get his phone. But I could have I would have if I could have but he was like fighting us. I'm like, I don't want to get punched in the face. But so the security guard tells me he's like, Jake, I need your phone, like him to your phone. He's like, okay, it gets out. And I asked him a few times, and he just didn't do it. In Windows. Yeah. So he hands it to the security guard. And I'm, I'm like, hey, you know, turn the screen on his ledger is 20 red arrow down. And I was like, I show it to the doctor. I'm like, Hey, this is his blood sugar. Like, can we do something about it? Which I've been saying it like the whole time we're trying to figure out what's, what's wrong with him like, he's diabetic. And he you know, he goes hypoglycemic all the time. Like, let's see what it is. And I had grabbed our glucometer and was like, gonna do a finger poke, but another one. fallacy I guess you say about the hospitals, they have to have a wristband with their patient barcode on it before you can access the glucose monitor, like you have to scan it. So it goes to their chart. But oh my goodness, like I and I've said it a few times, and no one really gives me a good answer why we can't just have like a $20 glucometer from Walmart, you know, that we can do like, goes until that can check his blood sugar that way because he wasn't in the computer because he was on a ladder like he's not a patient anyway. And so I like true

Scott Benner 50:30
or false. The custodian at your emergency room, if you weren't working would be better off having a seizure at my house than in your emergency room.

Anonymous Female Speaker 50:38
Yeah, because they were like, We gotta get a scan, we got to do this. We got to get Keppra, which is a seizure medication. Like, that's not going to fix his 20 blood sugar. And it was his Dexcom, which isn't, you know, and the moment blood sugar like that was, you know, 10 to 15 minutes ago, like, I'm

Scott Benner 50:54
so disturbed that you're describing a bunch of people who don't seem to have critical thinking skills. Yeah. When Yeah, that they follow like flowcharts in their head. Right. They hear words, then they do a thing. If that thing comes back this way, we'll either do this or this, but nobody can just think like, you're standing there yelling out, I'm assuming. Yeah, common sense. He has diabetes. People have said he's gotten low before. I've

Anonymous Female Speaker 51:21
had him all three times. Well, for at least three times for severe hypoglycemia. So I know he goes low. But yeah, yeah,

Scott Benner 51:28
he's got a glucose monitor on him. We could look at it. No order cesium medication. Yeah. Yeah, yeah. Okay. Yeah, we're all screwed. Don't get hurt yourself and bubble wrap if you're going outside. Sure, sure. Have the have the wherewithal to run into the ER yelling? Does anyone have type one diabetes? who works here? I only want to speak with you. Ah, oh, it's upsetting. It is. You know, it's scary. You're telling a story that's rooted in your in your absolute experience and truth. And people listening are freaking the fuck out right now. Right? Like, yeah, they're like, Well, what do I do if I feel the hospital?

Anonymous Female Speaker 52:05
Don't go. I'm just kidding. That's really bad advice. But Take someone with you that knows who knows what to help how to help you. Because

Scott Benner 52:12
if you have a heart attack, and listen, I'm gonna go over with you. If you have type one diabetes, you have a heart attack first find a friend. Yeah, knows all about your diabetes, call them up. Say, Hey, I'm having a heart attack, come over to the house and go with me to the hospital. Because I'm afraid they're going to kill me. Yep. Yeah. Like, yeah, great. All right. What about this? If I had written instructions, laminated? And I walked in there grasping them in my hands? Would they be ignored?

Anonymous Female Speaker 52:37
Depends on who your nurse and doctor

Scott Benner 52:41
could be. So again, we're looking for somebody who'd be able to read it. Yeah. Who can read? Yeah. Okay. Tell your story. Yeah. My daughter once had exploratory surgery. They just had to go in and poke around in her belly. Right. And we're, you know, it's obviously a scheduled thing. But you come in, and I forget how it was, you kind of came into the ER, they kind of they, they got you go in there. Then they took you upstairs and you know, and at the first kind of like, pitstop on the first floor, they got her ready, they put her in a gown and stuff like that. And I looked at the nurse to say, Hey, listen, she has type one diabetes, we've gone over all of this with the doctor previous to being here. Do you have all that information? And the nurse said, No, I don't see anything about that here. So that was the first thing I said, Okay. Well, guess what? She has type one diabetes. She's wearing an insulin pump. This is it right here. This has to stay on her. This is where she gets her insulin from. And then the nurses, I don't know if we lasted up. I've already worked this out with the doctor. It's staying on her. Okay, now she's lost. I said, Now this thing over here is a continuous glucose monitor. And she said, Okay, and I said, this thing is testing her blood sugar. And it's telling her pump through her cell phone, how much insulin she needs or doesn't need. It's literally giving her and taking insulin away constantly in a constant flow back and forth. Look at her blood sugar. And I pulled up her chart, I said, Look how steady it is. This is how steady has been overnight. And like since last night, this device and this device are talking to each other and accomplishing this. I need the phone to stay in the ER close enough to her that by Bluetooth that can speak to these two devices. We can't do that. And I'm like no. And she starts arguing like telling me all the reasons why this can't happen. Well,

Anonymous Female Speaker 54:30
it's one of those reasons starting to trap but what were those reasons we don't

Scott Benner 54:33
know how to work this stuff. It's not hospital equipment. Like she just started reaching me. I be honest. She started reaching upper asked for anything she could think of that would shut me up. That's what she was doing. Okay. There was no rules. She wasn't falling over rules. She was saying stuff out loud so that I would stop talking. I said, I'm gonna wait till the doctor gets here. We're not gonna take the stuff off or let's wait to the doctor gets here. Then she's in a huff. Okay. Then another nurse walks in sort of as this is Finishing up, and she goes, What's this? She has diabetes. And I said yes. And I just, you don't know me but I pivot from the one nurse right to the next one. And I just start retelling the story. I'm like, maybe I'll find a brain in this head is actually what I was thinking, right? So I re explained it again, I'm not exasperated, I'm like, this is this this is that here's what they do. As I'm showing it to her, she recognizes my daughter CGM. Her friend has diabetes. And she goes, Oh, my God, my friend wears one of those. I know what that is. And her just saying that made the first nurse sign off on it. She goes, Oh, okay, then it's fine. Like, well, I'm like, what is happening? This is all meaningless. Like, none of this is going to help her. So then I said, Okay, I'm like, so all you guys really have to do. And I said, I don't imagine this is gonna happen, cuz she's fasting and the CGM and all this stuff is working to keep her blood sugar stable, look how super stable or blood sugar is, etc. But you do have to be ready with some fast acting glucose through an IV, if she should get low on you in the room, and you can keep her phone if you want. And check it out by now we're going to put her on, we'll check her blood sugar intermittently, while we're in there. I'm like, this thing is trying to tell you what her blood sugar is constantly. It's like its whole job. You know? Yeah. The first nurse leaves the second nurses like, it starts telling me about her friend, as if this is if any comfort to me at all hurt, my friend has diabetes, and I'm like, Oh, fantastic. Then the doctor shows up. And she goes, it's gonna be fine. I'll get the the anesthesiologist in here to talk to you about it, blah, blah. So then the anesthesiologist comes in. And by the way, the doctor was great. And we had talked about it ahead of time, but she didn't do any of the things that she said she was going to do, like making the hospital aware and all that stuff before. Like that never happened. Yeah. And so now that the anesthesiologist comes in, and I say, Look, this is how all this stuff works. And he goes, Okay, well, we're gonna want you to shut off the algorithm. And I was like, Dude, the algorithms, what's keeping you from getting low? And he goes, Yeah, but if her blood sugar starts to go up, it's going to like, it'll give her insulin. I was like, Yeah, but it won't give her too much. It'll give her the exact amount of needs for the rise in the budget, that we're gonna really need you to shut the algorithm off. And I said, Okay. And I said, but you'll keep the phone near her, right. And he goes, Yeah, and they actually put it, he's like, we're gonna put it in this bag. Like, it's like a, I guess it was a clean bag or something like that. So he says, go ahead and shut the algorithm off, and then put it in this bag. And I gotta be honest with you, I took the phone and I swipe my finger out about a couple of times, and pretended to shut the algorithm off, and then stuffed the phone in the bag and stuck it under the gurney.

Anonymous Female Speaker 57:39
And that's what you should do. Because if they have a patient that has a function of pancreas, guess what's gonna happen if their blood sugar, so their pancreas is gonna give them insulin. So

Scott Benner 57:49
I just I was like, it's fine. And then I just stuck it under there. And guess what, everything was fine. Everything was fine. Yeah. And they weren't checking her blood sugar there. Although I want to give credit to the anesthesiologist who apparently got in the room, was intrigued by the whole thing and pulled Arden's phone out and left her Dexcom open.

Anonymous Female Speaker 58:08
I had that same experience kind of surgery last summer, and I was terrified, especially now being in the medical field. I've had like my gallbladder, I had a couple surgeries prior, I didn't really know to be scared. Now I'm terrified. And so I had this, it was like a minor surgery, but I was still you know, put under, and I was terrified that my blood sugar was gonna go too low. It was 134. When I went in, I still remember, and my husband was there. But you know, he couldn't go in the room. He also like, it's a lot to learn. And we've, you know, he, he gets overwhelmed. But anyway, so I'm like telling the anesthesiologist though, I was like, bro, my, like, I'm diabetic, I need you to watch my blood sugar. I also need you not to take my pumps. I had an omni pod at the time. I'm like, I need you guys not to take my pump and my Dexcom off because I need them on when I wake up. And also they're expensive. Please do not touch them. And he was like, Oh, do you have your phone? I'll just watch you. But like, I was shocked. I should talk to you more. But he was if you have your phone, I'll just watch your glucose for you. And I was like, I'm sorry. Why? How did you like like you're saying, How did he know? It was all my phone though? Like, I mean, a medical professional knew. But you found like, you found one that no, that's all. Yeah, but and then I'd even have my phone. So it's like, well, my husband has, like, please just don't let me die. He's like, we got you baby. And it was fine. But it was terrifying.

Scott Benner 59:23
Well, listen, I appreciate you coming on and telling the stories. It's It's upsetting to think that, that you can't find administration that's even interested in the education like they listened to you. But then when they gave you the chance to talk to somebody else, and nobody was paying if people really knew you had diabetes and went on their phones while you were talking?

Anonymous Female Speaker 59:44
Yeah, yeah. Like, well, this is what like devastated me the most, the manager who was my manager when I started and then the her assistant who was a floor nurse with me, we're in the back of the room, talking and laughing the whole time and Like, I, that's when I just shut down and stop, because I'm like, Are you laughing at me? Like, are you laughing that I care about, and I'm sure they weren't sure they weren't even listening. But it was just like, devastating to me that like these people that, you know, were my supervisors and a nurse that trains me like, they can. I know, they heard it before in the other meeting, but like, you can't even say here, it was a 15 minute presentation, like you can't even see here. And it wasn't boring. Like, I felt like it was pretty good. Like, you know, presentation that like would interest people. I was like, you can't even watch for 15 minutes and set the example for your, the rest of your staff to like, listen to this. So like, obviously, it's not important to any of you, except the one nurse that listen and ask the question.

Scott Benner 1:00:40
But, I mean, it's disappointing. I just I mean, by the way, not surprising, just disappointing. I don't, I don't know why I can't. For the life of me, I can't figure it out, it's not a thing. That would take it wouldn't take a nurse that much time or effort to actually learn about diabetes, type one, type two, and the management of it, it's just it and you might really help people. You know, like, I make this point all the time. But whether you're type one or type two, if you go to a hospital setting, where your expectation is the people around you really understand this. And they don't seem that concerned. If you're having pasta and bread, and milk, then you go home thinking, well, this is okay, pasta, bread and milk, this is an art, this is the diabetic food that they gave me at the hospital. If you're a type two, I mean, that can be disastrous, if that's what you think is okay. And the same thing goes for type one, my doctor tells me I gotta check my blood sugar every couple of hours or after I eat or before this, but the nurse never checked it, I must not even have to do that. And you just you lead somebody on a bad path. And that, that that's that like it just you're you're, you're supposed to be a good example. I mean, the verb that might sound Pollyanna and like I'm five years old, but if I can't expect doctors and nurses to be good examples about managing diabetes, who am I looking for? Like, who do I look to for this, then? That's, that's all. It's horrible. No, Jesus Christ. This is the best and worst idea I've had since I've been making this podcast. By the way, I'm like, God, people come on, I'll change their voices, so they can say what they want to say about healthcare. And now it just bums me out. Every time I do one of these

Anonymous Female Speaker 1:02:19
terrible things. I have like 16 More stories that would bomb you out more and more and more, just for three. That's something like three years, I've been in nurse three years. And I have multiple stories. And every single story except for one is about a type one patient, which is like so concerning to me that like, we don't understand this. We don't know what we're doing. And every story usually is the patient that speaks up that like saves themselves basically, like, it's so scared. Well, sorry, real quick. Just one patient had surgery. The doctor put him on a like a fluid drip afterwards. And he was actually my neighbor. So I went into say, hey, and I wasn't his nurse biozone and asked him, he goes, Is there sugar in my IV bag? I asked my nurse and she said no, but my blood sugar was 400. And I was like, Well, let me see what fluids you're on. It was like potassium, saline and dextrose, which is sugar. And I was like, Are you kidding me? Like your nurse said no, it's literally written on the back and your blood sugar's 400. Like something's wrong. But anyway, it just like just stuff like that. Like, were they keeping his blood sugar high on purpose? No, it just was like, texted his surgeon which I shouldn't have because I wasn't the nurse. And that's the thing. The surgeons not in the hospital. They're like managing these patients. But they're like that they're in the on the floor, right? So I like texted him. I'm like, Hey, Doc, his pleasures were 100 he has type one diabetes, you're giving him the five? And he's like, yeah, just take it down. So they keep it like the doctor would have no, like, if he would have thought about it, you would be like, maybe I shouldn't get this type one diabetic dextrose and this fluids, but it's the it's the fluids he gives to all his patients. So I knew why he was giving it because he just orders out for every patient. Because post surgery, you know, you want them to have those, you know, supplements and stuff and the electrolytes and the fluids. But like he's type one. So you actually don't want him to have that because when he goes he's like, I've been trying everything. I can't get it down. I'm like, Well, that's because we're literally feeding you sugar through your IV

Scott Benner 1:04:11
a firehose of liquid sugar at you and you don't have a firehose of insulin to shoot back. Can I? Yeah, I want to ask a question is where do you stand on this? If you had a strong feeling, I'm trying to find out if nurses are a little demoralized. If you had a strong feeling is it difficult to go back to the doctor and advocate for the patient?

Anonymous Female Speaker 1:04:33
Not not for me. So another story real quick. So when I was in the ER we hold the floor patients because the floors full and they there's no room for them upstairs so I had one the other night. He actually was not diabetic but he had high potassium which you give all these meds but one of them that we give is insulin because insulin and potassium are together in the body. We don't make it into all of it. But we give insulin to them to help lower the potassium but we're also giving them the IV push glucose like to like counteract that be transferred from it. ER doc to the Florida doc. He reordered all this stuff like I just give him I give him all the stuff as I talked to the doctor and I'm like, Hey, I just gave like, all these meds an hour ago. Like are you really want them again? And I've actually asked our ER doc because they're a lot nicer to us because they know us. And I was like, should I do these again, he's like, You should ask Dr. Smith because, you know, he like I wouldn't, but he's the doctor now. So I texted him, like you really want me to give him I guess I ordered it and and I and I was like, Okay, well, like I just gave him the insulin and everything too. And he hasn't eaten since like noon. And it's like 10pm I'm like, do you like Do you want me to be monitoring these blood? Like his blood sugar? And when he came in as larger was 62, which is okay, I guess we're like, they don't have diabetes, you know? So like, he only you know, they like normal, I guess, as like, as much as 62 when he came in, should I be watching this? And he just right? We're texting because it's easier than trying to get them on the phone? And he goes, nope. Okay, well, like I'm a little concerned about it. And so again, I go to our ER doc, and I'm like, Hey, you told me you know, like that I shouldn't be watching as much you're like, I'm concerned about it. Like it was 62 I gave it so we give 10 units of insulin IV. Like I've given that to someone and DK and they've dropped like 300 You know, from like, 500 to 300 and a couple hours, like, kind of scary, like, you know, they're just like, anyway to nondiabetic like giving them that much insulin. Yeah, it felt like a lot concerning. And it's what we do. Like it's the protocol, but I'm like, I just want to watch his blood sugar's too. And my eat. I will let this doctor take care of me too. I said just the one but there's two that I would trust. He goes, if you feel like you need to watch his blood sugar's with like finger pokes. You watch his blood sugar's he goes, because if doctors right to ask for that, like, he has no ground, you know, like if that's something because he told you not cuz I was like, well, he told me no. So I'm going against doctor's orders. It goes, if something comes of it, which nothing came of it. Because if something comes of it, like any person is not going to fault you for like, watching out for your thing. Yeah, that's I went, I went to the finger poke it was 52. So I'm like, Cool. I'm not going to give you insulin right now you're going to eat dinner is like 10pm I just gotten some food. Yeah, anyway, and then we checked it. I waited an hour checked it again. It was like 172 because we'd given like the push glucose like anyway, but yeah, so I don't feel scared because I'm like, I'm not gonna kill this patient. Because you are such an ass this doctor. So like, your soul? Do you think you're so smart? That like, you know, I ordered it and and I like it. But I know what I'm doing. And I was like, well, obviously, you do know what you're doing. But also

Scott Benner 1:07:35
not interested in that conversation. You're not interested in like, Hey, why are you asking me that? Maybe there's a reason that you have this feeling? I'd like to hear it. No.

Anonymous Female Speaker 1:07:45
Okay, so All right, I'm not scared, especially with diabetes, really, because I'm like, I'm not going to be the reason this patient dies or like, you know how severe side effects because I felt I knew I should do it. And I knew it was something I need to watch. And I just didn't want to upset the doctor. Like, I'll quit my job before I do something that I know could hurt a patient. So

Scott Benner 1:08:02
I hope you get to the next hospital and find a different situation. I really do. I have to tell you, I don't think you're going to but I really I really do hope that you do just maybe for your own sadly and I appreciate very much for coming on and doing this for me. Thank you very much.

Anonymous Female Speaker 1:08:18
Yeah, no problem.

Scott Benner 1:08:19
Very cool view Hold on one second for a huge thanks to Omni pod. Not just my longest sponsor, but my first one Omni pod.com/juice box if you love the podcast, and you love to Bolus insulin pumps, this link is for you. Omni pod.com/juice box Arden has been getting her diabetes supplies from us med for three years, you can as well us med.com/juice box or call 888721151 for my thanks to us med for sponsoring this episode. And for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at juicebox podcast.com to us Med and all the sponsors.

Also want to thank all of the brave unkind people who are coming on and sharing their anonymous stories for the cold wind series. If you are in healthcare, or in some way impacting people's healthy lives, and you want to tell your anonymous story, reach out to me through juicebox podcast.com. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox 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 Juicebox Podcast type one diabetes on Facebook. The episode you just heard was professionally edited. Buy wrong way recording. Wrong way recording.com If you're not already subscribed or following in your favorite audio app, please take the time now to do that it really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.