The Week My Insulin Pump Tried to Kill Me #12

This podcast episode delves into a harrowing experience Deborah had with her insulin pump, which she humorously describes as trying to “kill” her. After a software upgrade to her Medtronic Minimed 780G insulin pump, the default settings dangerously miscalibrated her blood sugar levels, leading her to experience seizures. With her husband away, Deborah faced the challenge of managing her diabetes alone while her pump continually drove her blood sugar down, leaving her in a precarious situation. Despite the frustration of dealing with unhelpful customer support, Deborah’s resilience shone through as she found a way to stabilize her condition. This episode offers a blend of technical information, personal anecdotes, and insights into the complexities of living with diabetes.

Key Takeaways:

  • Deborah underscores the necessity of patients taking control of their own health, with an awareness that sometimes those who “should” be there for them are not.
  • Deborah’s story illustrates the challenges of managing diabetes and the importance of vigilance.

Navigating the intricate world of diabetes management can often lead to unforeseen challenges, especially when technology is involved. Deborah, the host of DiabeticReal, shares a gripping personal story about a harrowing experience with her insulin pump after a routine software upgrade. With a blend of humor and candor, she reflects on the technicalities of the Medtronic Minimed 780G pump, detailing how an innocuous update turned into a near-disaster due to a default setting that dangerously mismanaged her blood sugar levels. This episode serves as a cautionary tale about the importance of understanding medical technology and the potential risks involved when users are left to navigate these systems alone.

The episode wraps up with a triumphant note as Deborah recounts how she ultimately took control of the situation, managing to stabilize her blood sugar and survive the ordeal despite the lack of immediate support from the manufacturer. Her resilience and resourcefulness shine through, inspiring listeners to advocate for themselves and be proactive in their health management. This engaging recounting not only entertains but also educates, making it a must-listen for anyone interested in the intersection of technology and personal health in the diabetes community. Deborah’s story is a testament to the challenges faced by many diabetics and the importance of being informed and prepared for the unexpected.

Chapters

  • 02:04 Introduction to Technical Topics
  • 02:39 The Insulin Pump Incident
  • 04:55 Understanding the Pump Settings
  • 08:03 Understanding SmartGuard Settings
  • 11:44 The Struggles of Managing Diabetes
  • 14:13 Navigating Medical Challenges

Episode Links

Episode Credits

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Transcript
Deborah:

Hi there. Welcome to another episode of DiabeticReal. And this is Deborah, your host. All right, I'm going to tell you right up front, this is a boring episode.

There's going to be a lot of technical stuff here that probably is duller than dull. So go find your puppy, go find your kitten, maybe a ball of yarn, Play with your puppy, play with your kitten, do some cross stitch, whatever it is.

That's funny, you know, hey, turn on the television. I'm not offended because we might get into some technical stuff here that's a bit dull. But I want to give you a little background here.

But hey, if you like technical stuff, this might be a little bit interesting if you're the scientific type, right? So here we go. I'm going to tell you about the week that my insulin pump tried to kill me.

I swear, if I actually believed in things like that, I would think this pump had it out for me. But you know, a pump and me, we're friends, so I know that's not the case.

But I was starting to wonder and, you know, there's a part of me that thought, don't do an upgrade on the pump software when your husband isn't home. When someone. It's not about me not knowing anything about software. Hey, that's my background. I'm a software programmer.

It's not about knowledge, it's about not having someone there for a safety, a backup in case you have a medical issue. But thought, hey, what could go wrong? I mean, it's software, right? What could go wrong? Yeah, silly me, I learned.

Anyway, so I was doing a basic upgrade.

It's a medtronic pump, and you do an upgrade on the software, and that makes that little piece of hardware, that makes it a 780 hardware because you're doing the software. So now it's a 780g pump. So I did this little software upgrade, no problem whatsoever.

And I won't go into all of the details of why this particular upgrade was not ideal for me, except to say that the default settings made it so that what it thought was the ideal for me as far as blood sugar, was actually a blood sugar that sent me into a seizure. Now, any of you out there, does that sound ideal?

If there's a blood sugar and your pump is saying, hey, we're gonna automatically send you to this blood sugar, and you know that that blood sugar sends you into a tonic clonic seizure, as in you're on the floor unconscious. Does that sound like a really healthy thing? No. Yeah, I Wasn't thinking that was healthy either.

Now, if it's something where you can change that number, the pump, hey, we're all on board with that, right? Something that you can modify in the settings. But no, it was hard coded.

Well, I wasn't really thrilled, but I thought, well, I'm, I'm kind of intelligent. I can figure out how to work with this. Well, no, this pump was dead set on this number.

So I'm going to, I'm going to explain this one in a way that isn't the most ideal way to explain it, but it kind of makes sense. First of all, let's explain the settings. And I think of this because I just had a meeting with my doctor today and I don't want to call it.

Well, we'll call it a friendly disagreement. And I explained what the pump was doing and she said, oh, no, no, it doesn't do that, honey.

It is doing that because the pump wakes me up about 10 times a night with a little warning that says I'm suspending all operations because of this. In fact, it is so annoying that it wakes my husband up to tell him. So he gets up because he wants me to get my sleep. What a wonderful husband he is.

And he looks at the warning, he reads the warning. There's two of us reading the warning because the pump is saying this, but the doctors say, oh, no, it doesn't do that. It doesn't do that.

Well, anyway, that's neither here nor there. The point is we know this pump. We have intimate details. And living with this pump 24 7, not just me with it attached to me, but my husband.

And this little thing wakes us up. But again, I'm getting ahead of myself. So let me put it. First of all, let me explain the settings in a way that makes sense.

If any of you use a computer, okay? It's called Smart Guard. So if any of you want to do research on Medtronic, the technology is called Smart Guard.

But that word, I'm diabetic and that word doesn't mean anything to me. Okay? So I'm going to use other words that make more sense to me. First of all, the setting is there's like an on off switch. Think radio button.

Okay, on, off, you can turn on what I'm going to call auto basal. The basal is like the insulin, kind of like your pancreas in your body that knows how much insulin you need throughout the day.

So that's like as you go about your day, you know, this, that, the other thing walking here Walking there, whatever. Your pancreas knows what you need, right? That's the basal amount, the basic amount of insulin. That's the auto basal.

So you decide if you're going to turn that on or you're going to turn it off. So if the doctor is talking about that, they're going to say the Smart guard is either on or it's off. The pancreas is either on or it's off.

Well, right next to that little on off switch is what I'm going to call a folder or a directory, depending on, you know, if you're Apple or your Windows, there's a folder or directory. It's your settings, if you will. Okay. And within that settings. You with me?

If you're thinking computer terms here, within that folder or that directory. So like if you open it up, there's another little setting inside that. Now guess what? That folder or that directory. Anyone want to guess?

That folder, that directory is called the Smart Guard settings. Yep. Really surprising.

No, it's the Smart Guard settings well inside of those settings, which again, folder directory, like you'd have on a computer, or settings. It's what I'm going to call. It's not really called this because it's a smart guard. I'm going to call it the autobolus.

Now, the bolus, when you're talking about Medtronic pump, is what's going to help you. It's actually called the autocorrection on the Medtronic pump.

But what it helps you so that if your blood sugar is out of whack, like all of a sudden we're just minding our own business and it goes up to 400, which is an awful blood sugar. It's going to say, wait, that's out of whack. That's not right. Let's bring it down because it's too high.

Well, that also happens if you go eat a jelly donut and you forget to take insulin for your jelly donut. It's going to say, whoa, your blood sugar is high, let me bring it back down. Because you didn't take insulin.

So that's like the shot of insulin, that's like the pancreas is going to say, hey, you took, you ate. I'm going to give you a bunch of insulin to help for the food. That's also. You're supposed to take insulin when you eat. So that's that little burst.

We'll call it a burst of insulin. So basal is your basic insulin throughout the day and bolus is your burst of Insulin. Got it. Basal, basic bolus burst.

But that little autobolus or auto burst is inside the little folder that says smart guard settings. So this discussion I'm having with my doctor, she's saying, well, that's not smart guard.

Okay, honey, it's not smart guard, but it's called smart guard settings. What are we arguing over here? What are we discussing? Whatever. Okay, well, here's the thing.

For some reason, when I turned the auto basal on and the auto burst on autobolus, my pump went into auto drive and it just decided to just plunge me into, like, I mean, into oblivion. It was gonna just drive my blood sugar down and down and down and down. That's not a good thing.

But if I didn't turn on the auto basal and I just turned on the auto burst, I was okay. Now, before all this, before this upgrade, I had the auto basal on that was available, but that little auto burst, the autobolus was not available.

It was a little different situation before the upgrade. So I was doing fine on that before the upgrade.

Now, here's my husband, he's out of town, and here's the pump, and it is just driving my blood sugar down with no warning.

And when a diabetic has a low blood sugar, as any of you know, listening to this, with type 1, when your blood sugar is that low, you can't think what your name is, let alone that you're supposed to eat sugar.

Now, we try to keep the sugar readily available, and I had it readily available, but I actually, even though my husband had enough sugar set up for me, I actually drank all the sugar in the house. We are always prepared and we always have like one and a half times as much as I needed. But that's how bad the pump was.

That's why I said the pump was practically.

The pump was practically trying to kill me because I went through all the sugar and my blood sugar kept going so low that there was no way I was going to get in the car and drive to the grocery store to go get more sugar because it was constantly low. I ended up going on the web and ordering food from Kentucky Fried Chicken. And I couldn't even think straight to know what I was ordering.

And the bill was like $50. I couldn't even tell you what I ordered. I don't even know what I tipped what, anything. I just had to get food so that I was okay.

The first time that I got my blood sugar high enough in three days and I could keep it high enough, I ordered about three boxes of sugar soda from the grocery store, drove the six miles to the store to have it delivered. Tipped really well, actually.

He said he couldn't accept a tip, but I was ready to tip him, whatever, to get it into the van, to get it home so I could have the sugar soda, just to stay alive until my husband came home. Now, in all this, I called Medtronic.

I begged for someone to talk to, but the technicians, they didn't understand the software yet because they're saying, oh, the auto basil here. He is such your Basil here. It's like, no, no, no. I'm explaining to them how it works. And they actually didn't know that yet.

I guess it was released too soon before the technicians understood how it worked. Whatever. I did get a hold of a clinician, as they call them, and the clinician said, yes, yes, Ms. Deborah, you're absolutely right.

That's how it works. But why are there only two clinicians in the whole company that understand how it works? And there's no one here that can help me?

Whatever it was, I don't want to fault Medtronic, but I didn't. I wasn't able to find anyone that could help me, so I had to figure out something else to somehow survive. So, perfect scenario, no?

But the goal was to stay alive. And so I made the pump work for me to stay alive. And you know what? It worked. I lived through it.

Even though I didn't get any call from Medtronic to help me make the pump work. But I made it work anyway. And I'm still here a year later. Coming to you from DiabeticReal. All right, guys, see you in the next episode.

This is Deborah, your host, DiabeticReal.

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