The Good, the Bad and the Dexcom

Note: Beta Cell is an audio podcast and includes emotion that is not reflected in text. Transcripts are generated by human transcribers and may contain errors. Please check the corresponding audio before quoting.

Craig: I'm Craig Stubing, and this is Thicker Than Water. From the day my aunt Laura was diagnosed with type 1 diabetes, she knew she wanted to get a Dexcom continuous glucose monitor. Unfortunately, she couldn't get one directly through her insurance. She had to go through a supplier that quoted her $1,800 to get started. She called around and see if she could get it cheaper somewhere else, but when it came time for her family vacation at Arizona in our last episode, she still didn't have one.

I flew down with an extra Dexcom sensor and a restarted transmitter. Right from when we put it on her, she felt better knowing there were alarms to warn her if her blood sugar got too low. When she got back home a week later, I walked her through the steps of restarting the sensor which bought her a few more days to find a way to get a Dexcom that wouldn't cost $1,800.

Laura: I did get the Dexcom last night after almost two months. [laughs]

Craig: Does it feel good? I'm sure it didn't feel good when you swiped the credit card.

Laura: What's funny is she said, "Okay, this is a big bill just so you know." Well, it was one-fourth of what I was going to pay if I went with the first manufacturer, so I was like, "This is fine."

Craig: Would you say what you ended up getting and how much it cost you?

Laura: Yes, hold on a second. Let me get the receipt.

Craig: Okay.

Laura: Now, anybody listening and wants to do this, you have to know that my insurance did not cover two parts of the Dexcom package. Your insurance has to say they're not going to cover it. My hardest part was trying to prove that my insurance said that they wouldn't cover it because Costco couldn't call the insurance they wanted to hear it from the insurance and the insurance wouldn't give me a letter. I had to have my doctor's office call. Get the rejection from my insurance. They wrote a letter on their letterhead, faxed it to Costco and then Costco could order me the Dexcom. We'll start with here-

Craig: What did insurance not cover?

Laura: Receiver, there's $218.46. The transmitter, it lasts three months.

Craig: It's just one transmitter?

Laura: One transmitter was $145.63 and then the pads were covered somehow through my insurance for a copay, so I paid $51.58.

Craig: For how many?

Laura: Three.

Craig: Up to three? For one month, $50 a month. You're basically paying $100 a month in the system?

Laura: It's a lot of money but-

Craig: Well, what was it before? It was $1,800, right?

Laura: Oh, they wanted $1,800 one of the companies I contacted.

Craig: Yes, I think it's funny that you wanted this thing so bad and your first introduction to the world of diabetes technology was using a transmitter that I restarted when I was in Phoenix on my laptop on vacation with you. Then I gave you a sensor and 10 days later you learned how to restart it yourself so that you could keep going because you still couldn't get the prescription.

Laura: Right. If Dexcom is listening, they're going to yell at us.

Craig: Yes. Well, I'm already on their shitlist.

Laura: Are you?

Craig: I think so.

Laura: Well, don't get me on it.

Craig: It's not that we want to do this. It's that we have to do this because the system is so bad. You came to them and said "I want to buy this product," and they would not sell it to you and so we had to hack this so that you could get it so you could feel safe.

Laura: I'm happy to pay for one but it's like drugs and insulin, you don't know what the prices are from vendor to vendor. You have to spend time trying to figure out, "How do I get something that I need, at a price that I think is reasonable and I can afford?" It's been like a double learning experience. I have to learn about the diabetes and then I have to learn about how I get all the things I need.

Craig: Which of those has been more frustrating or harder to learn?

Laura: I think it's the frustration of dealing with how to get the things I need when I need them. I ran into issues we talked about previously about getting that extra pen of insulin to take on my trip. There was a huge big ordeal to just get this extra pen. I was dealing with how to give myself the insulin and how to figure out what to eat at each meal but when I was preparing and I couldn't get the things I wanted, that was frustration.

Craig: We think it's just the insulin we take and the food we eat, but it has a lot of effect in a small amount of time like a small window. That when you eat something and your blood sugar shoots up that's like 15 minutes, and it has a huge effect but then, the rest of the day it's all these other things that are just slowly changing your whole body and that's the stuff that screws you up. Not to scare you.

Laura: No, you know what? I just saw on your Beyond Type 1. Did you see they now have a column with a psychiatrist who deals with diabetics and he's a diabetic? I guess it was his first column yesterday and it was really interesting to me that first, he talked about what happens when your blood sugar is too high and it won't come down. He was talking about the messages we give ourselves like you just said, "Oh, I'm too high. I need to get down," and how that in itself makes you stressed.

Then, the other end of the spectrum, he talked about being afraid to go too low, which there were two kinds of people who do that. Either the one who hasn't had a low, which is felt the symptoms, which would be me. Then those who have had a low and are afraid of a low but he talked about how some people who are afraid, who haven't had the low yet might keep their blood sugars high all the time. Well, I haven't done that because I've gone low. I hit the border-

Craig: You were nervous about it at first. That freak [crosstalk]

Laura: Right, and I still have a little nervousness but with the Dexcom at least I feel like I changed the setting so it signals me at 80. When it starts to go through the 80s-- well, I think I even did it at 90. Like last night I didn't hear it. Early this morning I was at 83 and it was 5:30 in the morning but the whole night I was pretty flat I think. See not knowing this is where you were talking to me about how the Dexcom can be bad and good. I saw I was going low and I thought I wanted to sleep some more, so I ate a few grapes. Well, of course, that brought me back up higher but I did get to sleep.

I think it's figuring out that balance of for me if I'm high and I'm sleeping I really don't think I'd worry about it but if I know I'm getting down to that low point, that's where I want it to signal me but I've had a few nights now where I've realized maybe I've always been flat at night but I never knew it. You know what I mean?

Craig: You tend to take a snack at night just to be sure.

Laura: Yes, I still take a little snack at night and most mornings when I wake up I'm below the 120. I think I'm supposed to between 80 and 120 when I wake up. If I'm hitting that mark, then it must be my basal is fine.

Craig: If you wake up in the morning you've succeeded.

Laura: See, that's so pessimistic.

Craig: We can look at it in a positive way. It's like, "Okay, I've survived the night. It's a new day. We can just go from here."

Laura: I know. Well, I'm trying to just look at it as I got a good night's sleep. See what? I'm old you're young. It's like "Okay."

Craig: I think it's a culture in general not just diabetics they don't value sleep and how important that can be for us. When you have diabetes and you're looking at the Dexcom, you can see the stress on your body translated into blood sugars and that puts stuff like that like the white bread into perspective in a different way that someone who isn't watching a Dexcom doesn't really understand. You can't really measure that stress in another way.

Laura: Oh, yes, like anything else, there's the good and the bad with the Dexcom. I mean it's good because I can learn but it can be bad because if I'm stressing about something, like why did you do that? If I get too frustrated about it, then it's going to raise my stress level and that's not good either. I think when I didn't have the Dexcom and the doctors told me, "Go ahead and have a snack at night, it's fine," and I did because she knew it would help me sleep, I slept great. Now, my goal is more or less go to bed feeling like it's high enough and then just I can check in the morning what I did all night but if I don't hear a beep during the night, then I'm probably doing okay.

Craig: Yes.

Laura: Don't you think that it the Dexcom, the problem with that is and I think when you see you're so high then you tend to think I have to fix it. Then when you fix it, you can screw it up and then you go really low. Having so much information, you have to take a step back when you see it and say okay, "Can I just wait an hour and see where it goes." Not with lows, but with the highs.

Craig: It's definitely easy to get on the roller coaster where you are constantly overcorrecting as opposed to taking baby steps and I think that's mostly you just get frustrated or you can hear. Like I'm low, I don't want to be low so I'm going to eat more than I know I should just to not below. When you're higher like I can't believe I'm high, I'm so frustrated that I'm high, or why will my blood sugar come down and then you take a ton of insulin to just bring yourself down. Then you're low again and then you just to pick.

Laura: You just do it all over again.

Craig: Yes. How much do you feel like type one is impacting your life right now, like your day-to-day?

Laura: Well, now I'm used to the routine. I'm not as worried about forgetting to take a shot. Again, having the Dexcom now, when I first got it with you, I don't think I looked at it as much because we were on vacation, but I did look at it. I would check it in the car if I felt like I was getting pretty low and we weren't going to eat for a while then I would have a snack.

That's how I've been trying to use the Dexcom as a, let's anticipate and then see where we go. Now with the Dexcom, I'm trying not to look at it a lot during the day. I'm trying to look at it in the more way I would have just done with the blood, with the meter. It would have been when I woke up, breakfast, lunch, dinner bedtime.

Craig: You're using it more like a safety net. It's there in the background and it will alarm you when something bad's happened but you're not obsessing over every five minutes.

Laura: Right. It's not like I have to think about it for a long period of time during the day, so that's good.

Craig: On the next episode of Thicker Than Water, aunt Laura starts unfollowing people.

[music]

Craig: Thicker Than Water is production of Beta Cell. That's produced by me, Craig Stubing. As always, a very special thanks to my aunt Laura. Our cover of Lean on me is by the super talented Nina Ragonese. If you haven't yet, subscribe to Beta Cell wherever you listen to podcast to get all of our shows downloaded onto your listening device as soon as they're available.

If you love Thicker Than Water, or any of the Beta Cells shows, you can support us on Patreon. Not only will you get the satisfaction of helping the show, but you'll get access to our exclusive supporter-only podcast out of range after dark.

I'm Craig and this is Thicker Than Water.

[music]