What Nobody told her about DKA and how it almost cost her her Life- Danica Collins

What if your blood sugar looked completely normal but you were actually dying!? In this episode of The Diabetes Diaries, Rachael Sood sits down with Danica Collins, a person living with Type 1 Diabetes, to discuss the dangers of DKA. Danica is a well known influencer and founder of Dia-log,  a health coaching and community platform dedicated to empowering people living with diabetes . She is joined on set along side her mother, Regina Collins, also a well known global mission worker. Danica shares the terrifying story of how she almost lost her life to diabetic ketoacidosis while flying alone from San Diego to New York City — and how her blood sugar never looked dangerously high. She breaks down what DKA actually is, why it can happen even when your glucose levels look fine, how she Ubered herself to the emergency room alone in a city she didn't know, what she wish she had known before it happened and the resources every person living with diabetes needs to have in place before an emergency strikes.

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Transcript

SPEAKER_00 0:00

Welcome to the Diabetes Diaries. I am your host, Rachel Seude. Joining me today are a mother and daughter who have been through something no family should ever have to face. Danica Collins is a person living with type 1 diabetes. She is a diabetes advocate, social media influencer, and founder of Dialogue, a health coaching and community platform dedicated to empowering people living with diabetes. Her mother, Regina, is a global mission worker who has dedicated her life to serving others around the world. Together, they are here to share a story about diabetic ketoacidosis, or DKA, one of the leading causes of death in people with diabetes, and something most people have never heard of until it's too late. Danica and Regina, welcome to the show.

SPEAKER_02 0:46

Thank you. Thanks so much for having us.

SPEAKER_00 0:49

So, Danica, you were living your life and then everything changed in an instant. What happened to you happens to a lot of people living with diabetes every single day, and most of them have no warning signs. You survived it, and you're here to make sure others do too. Tell me your story.

SPEAKER_02 1:08

All right. So this was a fun story. I was flying from San Diego to New York City, and I had big volleyball tournaments over the weekend. I was in the sun a little bit, so I was probably a little dehydrated, but worked on things. And then I was not feeling 100% before getting on the plane, but I was like, I gotta get on this plane. And I did. Unfortunately, in the air, life took a turn. I threw up over 10 times while in the air. This is a very long flight. And I couldn't keep water down. I couldn't keep gator down. I couldn't keep a cracker down. And I was just in and out of consciousness, just waiting to get to New York.

SPEAKER_00 1:50

Probably very scary. You were on an airplane by yourself traveling, right?

SPEAKER_02 1:54

Yes.

unknown 1:56

Wow.

SPEAKER_00 1:57

And so what happened next?

SPEAKER_02 1:59

Well, I'm texting my mom, which she's in Tennessee, so it's probably and it was like a red-eye flight. It was late. I was gonna land at like midnight. So she's asleep, I think. And it was just awful. Because I'm texting her, I was like, I don't feel good, I've been throwing up, but to the point where it's like I was having emergency everything, like instantly. And it was like I couldn't, I felt weak all of a sudden. And they made an announcement saying, Hey, we're having problems, we're not sure if we can land in New York, we might have to go further upstate. And I was like, no, no, no, we gotta get off this plane. And as soon as like the plane landed and the like ding goes on, and so you can start getting your bags, I had another emergency. And I had a flight attendant who I saw again, it was the second time seeing him on a flight, which is really rare. And he was just like, Danica, are you okay? And I was like, No, I need a wheelchair because I realized how weak I was. And I'm in New York, I don't live in New York. I know a couple hospital names, but I was at JFK, I don't even know where that is.

SPEAKER_00 3:02

You landed at an airport. Your was your blood sugar really high, or were did you even know what was happening?

SPEAKER_02 3:09

My blood sugar wasn't that bad. I've definitely been higher. It was in the 200s. Um, my inhalable insulin was up in the cabin, so I couldn't grab that on the plane. I'd given myself insulin, but I knew I wasn't eating or drinking or keeping anything down, so and your blood sugar wasn't that high.

SPEAKER_00 3:25

A lot of people think high, high, high blood sugar is what causes diabetic ketoacidosis. And I'm glad you're here to tell this story today because I think it's a lesson that everybody needs to hear. So, what happened after getting to the airport?

SPEAKER_02 3:39

So I called for a like wheelchair, it didn't come. So I somehow like made it out to the chairs, and I called my mom, and I was like, I think I'm gonna take myself to the hospital because I just thought I was dehydrated because I was so thirsty and I just felt weak, but I was just dehydrated and I was like, I need an IV. Like I said, I can't keep Gatorade down, so how else am I gonna hydrate? That means I can't do like a liquid IV or anything. And I just went, Googled hospitals and never Google a hospital. None of them have good reviews, right? And then I was like, you know what, I'm just gonna go to NYU. And I go, I Ubered myself to the hospital. I as soon as I got in the car, I took my um inhalable insulin because I was a little, I was still like high. I was like, you know what I'm gonna just bring it down. So by the time I get to the ED, I'm normal.

SPEAKER_00 4:27

Your blood sugar was in normal range, in normal range. But you didn't feel normal though.

SPEAKER_02 4:31

No, I did not feel normal. And I'm walking in, you have security at these hospitals. I have all my luggage. Right. So, and you have to go through the metal detector, so they're going through all my stuff, and I was like, you guys, I can barely stand. Yeah, like just let me through. And they go and are asking me all these questions, and then they sit me in the hallway, and then I get into the actual emergency room in a bed, and this lady comes up with a binder, not like a clipboard, like clipboard's far more normal, but a binder flipping through. She's reading what to do with the diabetic. I could see her. Wow. And she's like, Oh, you're diabetic, you have to go to the ICU. And I said, I really need an IV. I said, I needed that before you gave me ice chips, sitting in the hallway for 20 minutes.

SPEAKER_00 5:12

And how many hours had been going on since like you started feeling symptoms at this point? I mean, three, four, five hours, like the flight was six hours.

SPEAKER_02 5:21

Wow. So that was that was it. And so it was a long time, it was a very long process. And it was wee hours in the morning when I finally got treatment. And I had to go off my insulin pump, and I didn't know that I was in DKA, had no idea. And I they were just like, Oh, you're diabetic, it's protocol, they send you to ICU. And I was like, blood sugar's fine. I'm explaining how I'm managing my diabetes, which is unique. I'm not a textbook diabetic, I don't think there is a textbook diabetic anymore. And it was just a little bit of a nightmare. But luckily, like I work in hospitals um corporate-wise, and I was like, oh no, no, no, like she doesn't know what she's doing. They don't know this. This is a teaching hospital, which is very important. But in this moment where I'm like advocating for myself, trying to explain what's going on, and these things, like, I didn't need to be doing that. I just need to care.

SPEAKER_00 6:15

Yeah. And so you made it out of this hospital stay. Mom, what was that like for you when you finally woke up and saw probably text messages and calls from your daughter tell me that experience as a mom? Um, she had a friend near.

SPEAKER_01 6:31

So I started off by um texting her friend to see if the friend would go to the hospital while I was looking for flights. Um we didn't realize the urgency of it, of course, from the beginning, because we just thought it was a stomach flu or something like that. And, you know, she kept saying, I just need, I just need an IVE. I just need some, I just need some hydration, that's all I need. And then the next text I got was they're keeping me and they're moving me to ICE. So that's when I started looking for a flight. So um I think the earliest flight I could get was 8 a.m. So I think she communicated that probably about 4 a.m. or something like that. Um so uh panic.

SPEAKER_00 7:08

Yeah, and scary.

SPEAKER_01 7:10

And she'd never we'd never experienced this. A lot of people do experience it at the very beginning, and we had not. Um, and we do um Danica's very kind and patient with her parents because we can be helicopter parents, and so we do monitor her um her.

SPEAKER_00 7:28

Um, on her continuous glucose monitor.

SPEAKER_01 7:30

Much so, very much so. But it didn't look unusual because we've we've seen unusual. Right. And this didn't look unusual.

SPEAKER_00 7:38

We didn't see any alarms or anything with really, really high or really, really low blood sugar. So you thought everything must be okay.

SPEAKER_01 7:45

Right. I really just thought it's a stomach flu or something like that. And she really I was like her. She needed some to an IV to be hydrated and she'd be okay. Yeah, so this was really a suppressed.

SPEAKER_00 7:56

Yeah. So how many days were you in the ICU?

SPEAKER_02 7:59

Four days, and I remember just waking up and my mom was there. My friend came first and she was so sweet, but she doesn't know anything about diabetes, but she lived down the street and she came, and then she's like, Your mom will be here soon. And I was like, Okay. But I just didn't really understand what was going on, and I was coherent and I'm just like aware, but I was like, So what is going like what's wrong with my body? Because I couldn't get an answer.

SPEAKER_00 8:23

And you were just not feeling right. Was there a moment where you thought you weren't going to make it?

SPEAKER_02 8:28

Oh, on the plane. On the plane is when I thought I wasn't gonna make it because I've never been sick like that. And it was, I mean, it was so embarrassing. Like, never like now I know people get sick on planes all the time. Like, wash your hands like four times because that those things are gross, right?

SPEAKER_00 8:50

Most people watching this have never heard of DKA or diabetic ketoacidosis, and quite frankly, a lot of people are scared to ask about it or scared to admit they don't know what it is, and it's something that they need to watch out for. So, what do you wish someone maybe had told you or taught you about this before this happened to you?

SPEAKER_02 9:12

I wish I knew about the variations of DKA, and that you it's common for some to not have all the symptoms. And I had no idea. And just to look at it, it might mimic a stomach bug, but if you have nothing else going on, I don't have a fever, I don't have anything else. So if someone's out there, I want you to know it's okay to ask for help, it's okay to not be okay. And there is times you could do everything by the book and still have something happening. Your body has an organ that doesn't work properly. Like we're not supposed to be normal, we're not supposed to be a statistic number. We're gonna have variation and things aren't always gonna go to plan. And it's okay. That's the whole point of what diabetic diabetes is. It's a mystery every day.

SPEAKER_00 9:58

Yes, it sure is. It's very unpredictable, and something people need to be aware of is that hyperglycemia or high blood sugar is a different number for a lot of people. So it's very relative to a situation, especially in yours with dehydration. And we see this commonly in people that are doing endurance training, athletes, and there's definitely some things here at ADA that are being presented that actually relate to your story. You know, now we are going to have very soon continuous glucose ketone monitors that can detect ketones for people. And there will be different levels of alarms. Um, and you know, it's technology, so it's it's nothing perfect. However, I wonder like, how do you feel? Are you hopeful for technology like this? Do you think something like that could have alerted you or saved you in a situation like this?

SPEAKER_02 10:51

It could have let me know because I felt, I mean, I felt bad, but on paper I looked fine. I looked fine, but I wasn't checking my ketones. Like DK is not just about your glucose, it's about your ketones, it's about your aon gap, and going from those, and I didn't know to even look at it because my warning signs didn't put me in that direction. So having a technology or something else that I have to do where I don't have to go urinate on a stick would be great.

SPEAKER_00 11:18

In the middle of an airplane, especially, right?

SPEAKER_02 11:20

Like that's a in the middle of the night, and then grabbing it for a bag or they and they do have um different ketone meters and things, but that still is a little bit inconvenient. So wearing a device that could do both, and that could help me have all the information that I need to make informed decisions on my health will really be helpful.

SPEAKER_00 11:38

So, what do you want every single person living with diabetes? And Regina, I'll ask you the same thing, and every parent of a child with diabetes to do after watching this and hearing your situation.

SPEAKER_02 11:53

I want everyone to get a ketone meter and carry it on them. I know it's a hassle, but it's something that could really help your life and give you information. Because if you're feeling off, check everything. That's what a doctor would do, that's what a healthcare team would do. You want to check, you want to be informed so you know how to move and how to take care of yourself. So anyone that's dealing with this or afraid or trying to be prepared for DKA, let's go through those resources, talk to your provider about it, have a DKA plan.

SPEAKER_00 12:23

Yeah.

SPEAKER_02 12:24

Because I didn't have one in place. I didn't know it was a thing. It's something that when I was diagnosed, they were like, oh, this might happen. Yeah, but I wasn't diagnosed through DKA, I didn't experience it. And I just something I was like, oh, that'll never happen to me.

SPEAKER_00 12:36

Right. And then it did.

SPEAKER_02 12:38

It did. It can happen to anybody, it doesn't matter if your A1C is perfect or not. Yeah, it can happen.

SPEAKER_00 12:46

Yeah. Regina, what any tips or pearls for other parents out there?

SPEAKER_01 12:53

Um, for starters, I think everyone needs everyone that's um related to a diabetic or in the in that world, just to educate yourself for starters. Um, I I watched Danica as best as she could um educate an ICU staff, educate a main floor staff, uh, because they were doing some really bad things that could have made things worse. Not that I'm not saying they didn't do some really good things as well, but there are some things she literally had to stop them from doing that could have possibly made worse.

SPEAKER_00 13:25

You bring up something very important because I'm a nurse practitioner, but I used to be an ICU nurse, and I can tell you the things that I do as an NP, as an HCP in an outpatient setting are very different than what we do in an inpatient setting. And all of these things about diabetes and all the bad things can happen, I can tell you I didn't learn one of those in nursing school, not one. And if they did, it probably went right over my head. And a lot of times we learn on the job, and I hate to admit that, but that is the truth. And the public needs to know that it's not that doctors are bad, it's not that nurses are bad, it's not that hospital systems are bad. We need all of these systems in place, but what do we do to help educate people on the inpatient side so that we can help you better, so that we can take care of you better. And interestingly enough, it's been the people that are living with diabetes that are teaching everybody. Right. Not us, it's you.

SPEAKER_01 14:19

That's why advocacy is so important. Advocate for yourself. Yeah. Um the next thing I would say is have a plan. I there's so many times that we've walked away from a situation, even though I, again, we are helicopter parents. Um, we've walked away from a situation and said, Oh, we didn't have a plan. And so when she got to New York, I was just like, oh, why haven't we had a plan? Why haven't we had that connection in New York? Because she she does travel alone. And I just thought, ah, we don't have somebody. She did have a good friend that I was very easy to to um text, and she was there immediately. But just have a plan. When Danica got off the plane, she had to rely on total strangers to maybe bring a wheelchair um or either get an ambulance or you know, an Uber to a hospital. I I even asked her, I said, what did the Uber driver say? Take me to the emergency room. Yeah. But just have a plan. Right.

SPEAKER_00 15:14

Part of that plan, I've been seeing a lot of things on social media. I'm wondering if you all have any tips. There's identifying pieces for people to wear, like bracelets or jewelry or tags or a lot of resources during travel. So I'm wondering, do you know of any of those resources for people living with diabetes that maybe they can use or carry with them during travel?

SPEAKER_02 15:36

Yes, so since my experience, I have upped my identification. So when I'm wearing my watch, I have a band on it, it has a QR code, it has my mom's phone number, it has everything I'm allergic to, and it says type 1 diabetic. That's when an emergency provider is there, they know to look for these things. A lot of people get tattoos, but I wear a necklace identifying something like this one right now that I have on. You could tell it's not like normal. You're like, oh, like someone who's medical could pick it up, right? But not somebody who isn't medical. Yeah. So on all of my bags, I have a little keychain that I put on everything. It says type 1 diabetic. So all my luggage, all of my purses, even my everyday purse, I carry that around just to identify a little bit more. And then I have a note in my wallet. Um, because those are when some something's bad, people go to look for your identification. Right. And I have here just like a note to type 1 diabetic emergency contact.

SPEAKER_01 16:30

Yeah. And I understand being an adult, and I say be an adult and live your life, but make sure someone can identify where you are, where you're going, um, who you'll be with, or just something so you just won't be totally alone. Just somebody will have some type of connection for you. So had we not known she was even flying that day, we wouldn't have had a clue. So just somebody.

SPEAKER_02 16:54

And I share my location with a lot of people. Um, blessing and a curse. But it's one of those things I travel often, I'm in different cities all the time. And I just want people to know where I'm at. Because the last thing where I'm at, I'm like, I don't know. What a plane. Yeah, you know, but my best friend from college had randomly been texting me, and she called me the next morning and she's like, I was looking at flights. Like, what do you need? She doesn't know a ton about diabetes, but she's like, You should not be there. And I was like, I'm fine, they're just gonna give me an IB. Like, I was nonchalant, like I'm gonna Uber myself to the ED. Wow. And everyone else, even my brother, was like, that's such a like rough text to wake up to. I was like, oh, didn't think about it. I'll just let you know what's going on.

SPEAKER_00 17:35

You are such a trooper, and just thank you for sharing your story. I think it brings a lot of awareness to this is a problem. And, you know, when we're looking at how to how do I do a better job, how do we do a better job as healthcare providers at treating people with diabetes? It's not teaching you how to manage your diabetes. It's making sure you have resources in place for when things go wrong. That's all that it is in supporting you. So this education and this story is going to reach so many people so that they know diabetic ketoacidosis can happen without severe high blood high blood sugar. And that's a very important um pearl that you shared.

SPEAKER_02 18:15

Yes. And one thing that I did do um with dialogue, I started a DK like planning sheet and emergency plan because I was like, I don't have one. Well, if I don't have one, I'm sure someone else doesn't have one.

SPEAKER_00 18:27

Right.

SPEAKER_02 18:27

So things like that just happen from a lot of real life experience or things that I hear from other people. So I just try to make things that are useful so people can have them in their best.

SPEAKER_00 18:36

You share that with your clients so that they have some resources and this in place. That's great. Thank you so much for sharing your insights, sharing your personal story. And um, I'm so glad that your mom is here for you. Uh, this reinforces just support systems, whether it's a mom or a friend or a family member, and also the ability of technology that we have now in place for all of these follow apps. Um, I'm excited about the future of technology, ketone monitoring, and hopefully it'll do a lot of things and prevent more hospitalizations.

SPEAKER_02 19:11

Absolutely. Yes, avoid the hospital if you don't need to be there.

SPEAKER_00 19:14

Exactly. Thank you. Thank you.