Trying to Stay in the Loop with DIY Diabetes

I can’t remember exactly when I heard of “DIY diabetes”, also known as “looping”. It may have been at a conference a few years ago, or maybe I saw something about it on social media. Either way, it seems to have totally blown up as more and more people with T1D are looping.

TRYING TO STAY IN THE LOOP WITH DIY DIABETES
Are you a Looper?

Before I talk about it more…a brief definition of looping. Loop refers to a kind of automated insulin delivery system. According to what I read about it on diaTribe, Loop systems are open-source and DIY, meaning that T1D Loopers download an app for the iPhone that communicates with a device that also communicates with compatible pumps and CGMs.

If you’re confused, don’t worry – so am I. There’s a number of moving pieces involved with Looping that make it daunting and difficult for me to keep up with as the technology changes. But the ultimate goal of Looping is what has me interested in it. Looping is supposed to help improve time-in-range, particularly overnight, because it does a lot of the thinking for you and ultimately makes life with diabetes easier. And I’m all for that.

Looping’s been popping up on my social media a lot lately because at the end of April, the geniuses behind Loop announced that compatibly with the OmniPod for the first time. (Previously, Looping was only available to Medtronic folks.) On what feels like a daily basis, I notice more people on my social media platforms – particularly Instagram – who are Podders that have made the decision to start Looping. The common denominator with many of these individuals, besides being Looping Podders (sounds like a wacky band name) is that they’ve found great success in doing so. It seems like each person spends 90% or more of his/her time in range, encounters fewer low/high blood sugars, and wastes less time worrying about diabetes in general.

All of that sounds too good to be true. Of course my interest is piqued by such incredible results, and of course I’d love to dive right into Looping and see whether it’s a good fit for me. But the reason why I don’t is simple…I just hesitate to trust new technology.

Technology can fail. Plain and simple. All operations for Looping with the OmniPod take place on the iPhone. That means that the PDM is rendered useless. What happens if I lose my cell phone? What if the battery dies when I need to bolus? What do I do when I upgrade to a new phone? There are so many questions I can think of related to the phone issues alone, never mind any other potential problems. Put simply, the unknowns – the “what ifs” – terrify me so much that I can’t help but be skeptical of Looping.

But this doesn’t mean my interest goes away. My curiosity about Looping is stronger than ever. The DIY element is frightening, but the rewards could be greater than the risks.

The only thing I know for sure is that I won’t even attempt to Loop until I have a conversation with my endocrinologist about it. Together, we make decisions about my diabetes care and treatment that we both feel are safe and right for me. I’d love her opinion on Looping to see how much she knows about it and whether she has any patients who use it. Until I talk to her and gain more information from other Loopers, it’ll just be something that I cautiously admire from afar on social media.

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Testing for Accuracy, in Addition to Blood Glucose

This post originally appeared on Hugging the Cactus on March 21, 2018. I’m republishing it now because of a recent experience I had with my meter reporting inaccurate and inconsistent blood sugar levels. Has this ever happened to you? Drop a comment and let me know.

Blood glucose meters serve the sole purpose of checking current levels of glucose in the blood. Pretty self-explanatory, right? And it’s equally obvious that it’s crucial for all meters to generate accurate results so PWD can make the right treatment decisions based on those numbers.

Unfortunately, though, accuracy isn’t always what I get.

The other day, I was running low before bedtime. I corrected with an organic rice crispy treat (honestly, it was a million times better than the brand name kind). I waited nearly an hour for my blood sugar to come up. When my CGM wasn’t showing any progress, I tested: I was 47. It’s rare for me to be that low, so I tested again. 52. I believed it, especially since I was experiencing several hypoglycemic symptoms.

B. J. Palmer

I chugged a glass of orange juice and plopped down on the couch to wait for signs of improvement. Before long, I was freezing cold – a sure sign I was coming up, because I had been sweating 20 minutes prior. But I didn’t feel comfortable going to bed yet. I wanted to see if my CGM would show an up arrow. When it finally did, I made my way upstairs to brush my teeth and wash my face. In the middle of my routine, though, I decided to glance at my CGM again – and saw the dreaded ??? screen.

I decided then that the Dexcom should be out of commission, a.k.a. not trusted at all, for the remainder of the evening.

I ripped it out and inserted a fresh one, not really caring that it would wake me up in two hours to be calibrated. I would need to set at least two alarms for the middle of the night, anyways, if I decided to go to bed disconnected from my Dex. So it just made sense.

Once that was done, I tested again. I was pretty tired at this point and really didn’t want to have to eat something else, so I did it as quickly as I could. In my haste, I jostled my meter just so – enough that I saw the test strip, already marked with my blood, move slightly as it brushed against my PDM and was placed next to it.

113 mg/dL flashed upon the screen. Normally, I’d be thrilled! But I furrowed my brow. Something just felt…off about that reading. So I tested again.

206.

What?!

I tested a third time – 203. Okay, something was definitely wrong. Either that 113 was wrong (likely) or my meter had just produced two wildly inaccurate blood sugars in a row (less likely).

This is one of the many times that it’s convenient to live with another PWD. I asked my mom if I could borrow her test kit and see what result it generated. Seconds later…a twin 203 popped up on the screen, reassuring me that the 113 was a fluke on my meter.

Relief with the reality and irritation with the technology washed over me simultaneously as I went to correct the high with a bolus. I was glad I wasn’t heading down again, but irked that my meter had failed me. True, it was a bit of human error there, but aren’t we at a point in technological advancements where this sort of thing just shouldn’t happen? I put my life into the “hands” of my meter, Dexcom, and OmniPod. They should produce results that are undoubtedly accurate.

I guess we aren’t quite there yet.

The Red Wedding

If you’re reading this post and knew immediately what the title was referring to…rest assured that what you’re about to read is not nearly as dramatically violent as The Rains of Castamere episode of Game of Thrones. I just chose the title because it semi-accurately described what I encountered with my CGM at a weekend wedding I recently attended. And because the final season is here in a mere FOUR DAYS and I’m struggling to hold in my excitement/terror/anticipation.

Anyways, the day of said wedding began normally, if not a bit early. I put on makeup and a nice dress, tried (and somewhat failed) to curl my hair, and ate a light breakfast. Somewhere between slipping on my jewelry and singeing my hair with the curling iron, I heard my CGM’s alarm blaring, notifying me that my blood sugar was going up. That wasn’t surprising, since I’d just eaten food. But I was caught off-guard when it stopped alarming after two alerts went off…I hadn’t dismissed the previous two, so why was it no longer making any noise?

I checked the app on my phone and saw “sensor error” on the screen…and said out loud, “NOT today, diabetes,” as I promptly stopped my sensor and ripped it off my body. I didn’t even hesitate to do it because I knew that the sensor was due to be changed that evening, anyway, so I saw no harm in doing it a bit early.

“What?” My partner yelled from behind the bathroom door.

“Nothing, nothing,” I said dismissively, which reflected my determination to just brush this inconvenience away and stick a fresh sensor on my body.

Oh, if only it were that simple…

It should’ve been an easy, routine sensor change; alas, upon pressing the button on the insertion device, I let out a little pained squeak. Sensors don’t normally hurt, but every now and then, I get myself in a sensitive spot. And I definitely did this time around. Before popping the transmitter into the sensor, I noticed a bit of blood pooling underneath the sensor’s adhesive.

Save the date

Pools of blood as I make my way to a wedding…do you get the red wedding connection now?

Fortunately, this tale has a happier ending than it did for much of the *spoiler alert* Stark family. Sure, my sensor kinda freaked out when it warmed up two hours later and measured blood instead of interstitial fluid, and it took like 12 hours for it to get its act together and display my readings accurately, but…it all worked out in the end. And thankfully, not a single person had any clue that there was a patch of blood on my belly throughout the wedding…it didn’t even stain through my dress.

Is a Bleeder a Reader? My Take on a Bloody Dexcom G6 Insertion

This blog post probably shouldn’t be read by anyone who gets squeamish when discussing blood or when viewing photos that show any amount of it…my apologies in advance for a bloody gross blog post, but I thought this was a good topic for discussion. 

I placed the new Dexcom G6 sensor on my abdomen, hovering my index finger above the large orange insertion button. I pressed it, exhaling as I felt the minute needle pierce my skin’s surface. I looked down, and started to rub the adhesive in circles to make sure it was stuck, when I saw blood. Not just a drop, but a decent-sized pool forming beneath the sensor. Before long, just about the entire surface of the white adhesive was soaked in red.

Yeah, this was going to be a no-go.

It’s pretty rare for me to experience blood at the site of a Dexcom sensor. If I had to put a number on it, I would say less than 10% of my insertions draw blood. An even smaller amount – like, 2% – have caused me to bleed as much I did in the scenario described above. But I know I’m not alone in my bloody sensor experiences – it’s something that many other T1Ds who use a Dexcom have gone through.

There’s a bit of debate, though, that I’ve noticed in the past on Twitter threads and Instagram posts. What to do with a bleeder? Keep it and assume that it’ll read blood sugars normally? Or change it immediately and call Dexcom for a replacement?

Are bleeders readers? Or does it depend?

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Do you think that bleeders are readers?

I’m going to go with…it depends.

Obviously, in that situation I described in the opening of this post, I decided that it wasn’t a good idea to keep the sensor on my body. There was too much blood and I didn’t trust that it would adhere well to my body. I didn’t know how long it would take for the blood to stop (only a few minutes, but still), and I couldn’t be sure that it wouldn’t mess up my readings. On top of that, I wasn’t trying to stain my clothing, if I could help it.

So in that circumstance, I did change my sensor right away, and was glad that the second try resulted in a much cleaner, blood-free insertion. I called Dexcom, explained what happened to the customer support representative, and got a replacement sensor mailed to me.

However, just about any other time I bleed upon a sensor insertion, it tends to be a minuscule amount of blood. I usually don’t even notice until it’s time to replace the sensor, and there’s a bit of dried blood left on the site. Other times, I’ll see small beads of blood forming underneath the spot where the transmitter snaps in. And there’s been a couple of occasions that I’ve bled a fair amount and been totally unaware of it until I caught my reflection in the mirror and noticed the blood staining the white adhesive. And in all of those cases, I’ve kept the sensor on for the full ten days, without noticing any discrepancies in my readings.

All that considered, in my inexpert opinion, I think that bleeders usually are readers and that they’re safe to continue wearing. Of course, there will be exceptions, like when there’s just too much blood to salvage the sensor. But every time I’ve kept using a bloody sensor, I’ve had the same amount of success with its functionality…so yes, I think that for me, bleeders are indeed readers.

 

Favorite Things Friday: My Very-Precise Pod Change Procedure

One Friday per month, I’ll write about my favorite things that make life with diabetes a little easier for me.

Not too long ago, it occurred to me that I am very, very, very, very, very strict about following a specific protocol every three days when I change my pod. In fact, it rarely deviates, but when it does (due to circumstances beyond my control), it throws me off track, like, a lot…which is why the way I do it is my favorite way.

my pod change procedure
Detritus from a typical set of site changes.

What’s so precise about my pod change procedure? Let me walk you through it…

Step 1) The numero uno thing I do, a half hour before I start my procedure for real, is remove a vial of insulin from the refrigerator. I’ve always been told that it’s important to let the insulin reach room temperature for at least 30 minutes before I start the pod change process. My mother was the one who told me that this step is crucial, because years ago, she’d heard from a representative at Insulet that room temperature insulin works best with pods for whatever reason.

Step 2) Once my insulin has reached room temperature, I set myself up at the island in the kitchen to go through the rest of the process. I make sure I have a totally clear area and ample lighting before I start on step #2.

Step 3) Next, I take an alcohol swab and wipe the top of the insulin vial that I’m drawing insulin from, and then I wipe my new site.

Step 4) Before even touching my PDM, I grab my syringe, stick it into the vial, and suck up the amount of insulin I’ll need for the next three days. This is usually somewhere between 100 and 150 units.

Step 5) This is where I deactivate my old pod, and jab at the buttons on my PDM to start the new pod activation process. The only reason why I get insulin into the syringe first is to minimize the amount of time I spend without a pod on my body. You might be surprised to learn that a short period of time without insulin can make a difference on blood sugar levels, but that’s just the way it is.

Step 6) I fill the new pod with insulin and hit a button to get it to start priming. During the priming period, I use an adhesive wipe around the new pod’s site to help it stick better to my skin.

Step 7) I finish up the process of removing the pod’s needle cap, then the adhesive stickers. I apply it with care to the new site and put pressure on it as I wait for the cannula to inject itself under my skin’s surface. And then I’m good to go!

Of course, I can’t always follow these steps as I’ve outlined them above. And while it messes me up a bit, and I usually have to take a little longer to change it, I roll with the punches and get it done. For instance, when I last visited Disney World, I had to change my pod in one of the park’s dimly-lit family restrooms with my mom using her outstretched hands as my mini work surface…far from ideal, but it was what it was.

Like all things associated with diabetes, I guess that I take comfort in keeping a routine, even with something as minor as a pod change.

A Pod Failure Won’t Foil my Fun

I had just zipped up my coat when I heard a faint, high-pitched beeeeeeeeeeep emerging from somewhere in the vicinity.

My mom and I exchanged looks. “Uh, oh,” we said simultaneously.

“It isn’t me,” Mom said, patting her pod.

“It can’t be me, it sounds too far. Are you sure it’s not the refrigerator door that was left open?” I asked, as I unzipped and peeled off my coat.

She didn’t have to answer the question, though, because as I took my coat off, the beeping sound grew louder. I looked down at my abdomen and cursed. Yup, my pod had just failed.

I wasn’t totally surprised that it happened. The dry winter air was triggering excessive static electricity that weekend, and the sweater I chose to wear that day seemed to be charged with it. I couldn’t move my arms without hearing little sparks going off. If I was smart, I would’ve changed my top to one that was less filled with static. But I had somehow managed to convince myself that there was no way my pod could possibly fail due to my clothing choices.

I know better than that.

The real kicker in this situation is that we were obviously headed out somewhere – we were hoping to go to our favorite bar for a quick drink. But with the pod’s failure occurring at basically the most inopportune time, we were left with a three choices:

  1. Stay home. Take out the insulin, wait a half hour, and resign ourselves to the fact that it just wasn’t a good night to go out.
  2. Go out, but take a syringe and a vial of insulin with us. That way, I could give myself a shot, if need be, while we were at the bar. We could head home after the one drink and I could change the pod once we were back.
  3. Go out and take a total risk by leaving all extra diabetes supplies at home, and just wait until after we had our drink to change the pod.
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A cocktail by the candlelight.

I like living on the edge sometimes, but option #3 is just way too dangerous. So we went with option #2. If you’re wondering why we didn’t just opt to wait a half hour (insulin needs 30 minutes to come to room temperature before it can be put into a new pod), it’s merely because we didn’t want to stay out late. And yes, a half hour can make that much of a difference to me and my mom!

So we left the house with an emergency insulin vial and syringe in tow. And it’s amazing how much better it made me feel to know that I had both, just in case.

Fortunately, I didn’t need them. I monitored my blood sugar carefully during our hour-long excursion, drank plenty of water, and deliberately chose a lower-carb, whiskey-based cocktail that wouldn’t spike me. And I was able to enjoy every last sip of it before returning home and changing my pod soon after walking through the front door.

I do have to say, though, that under different circumstances, I’d absolutely make different choices. If we weren’t less than three miles away from the house, and if we’d planned on staying out for more than a single drink, then you bet your bottom dollar that I would’ve changed my pod before going out. But in this situation, I made the decision that felt right for me, and felt comforted by the fact that I had backup supplies in case I needed them.

 

Third Time’s the Charm: Here’s How I Restarted My Dexcom G6

You GUYS! I finally did it! I managed to restart my Dexcom G6. Sometimes, a little bit of trial and error pays off.

I restarted it by following the exact same steps that I linked to in my post from a few weeks ago. It involved five simple things:

  1. Allowing my sensor to expire and remain on my body
  2. Starting a new sensor session and choosing “no code” when prompted
  3. Running the 2-hour warm-up session for only 15 minutes, then stopping it
  4. Starting a new sensor session again, without a code (if you still have the code, though, that you used when you first inserted the sensor, then enter that into your receiver/app. But don’t make up a code or enter one from another sensor – just say “no code” if you don’t have it)
  5. Allowing the 2-hour warm-up session to take place and receiving readings once it’s complete

The only thing that was different between this time and last time was the steps leading up to the restart. What do I mean by that? Well, for starters, I made sure I was attempting to restart a sensor that was giving steady, reliable readings – it seems as though it’s impossible to restart a sensor if it’s experienced any sort of error in the 10 days it’s been worn. So this means that when the sensor expired, I’d been receiving readings consistently up until the moment it expired.

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That gap represents the sensor’s second round of two-hour warm-up.

That was the main difference. The location of the sensor I restarted was the back of my arm, which may or may not have affected the restart. I also restarted without using the sensor code, which I had set aside to use but somehow misplaced prior to the attempt. I have no idea if having or not having the code makes the restart more or less successful, but I do know for sure that I got three more full days of use out of my sensor. Cumulatively, that means that I was able to wear the same sensor for almost two full weeks! It might not seem like a lot to the marathoners who are able to make older G5 sensors last 3-4 weeks (I’ve even heard of people keeping the same one on and working for 6 weeks), but it’s exciting to me to have confirmation that it IS at least possible to restart a G6 sensor.

In terms of the sensor accuracy, dare I say that it was even MORE accurate on the second go?! I don’t have proof to really back that up, but honestly, it seemed that it was right on point with all my blood sugar readings (within 5-10 mg/dL). I don’t know how to explain that, but no complaints about it here.

The only other difference that was noticeable during the sensor extension was that I was prompted to calibrate at least every 12 hours. No big deal, since I had to do that when I was on the G5. But it caught me off-guard a bit at first, because on both my receiver and within the Dexcom app, a small blood drop icon was always visible onscreen (when actively checking the app or the receiver). Initally, it wasn’t too alarming because it was merely a reminder to calibrate twice daily. But then it became an absolute nuisance when weird “calibrate after __ A.M./P.M.” messages occurred multiple times per day. I would check my blood sugar at the appropriate time and enter the result into my app/receiver, only for it to be rejected and trigger another specific time-calibration message.

To me, that indicated that my sensor’s second go-around ought to come to anend sooner rather than later. It was getting obnoxious to have to wait and check my blood sugar manually in order to appease the Dexcom messages that kept popping up. Plus, it came down to my comfort levels with wearing a sensor for a certain length of time – I just don’t love the idea of keeping the same one on for ages.

But this was my first taste of success with restarting a sensor, so naturally, I want more of the same! I’ll definitely continue to try to extend the life of future sensors, but remember, follow the steps above at your own risk. When in doubt, simply follow protocols as outlined by Dexcom. If I experience an even more successful sensor extension, you can bet that I’ll have all the details to share with you all here.