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.

Advertisements

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?

1B278EF4-8498-4968-81F9-9134870F3C1E
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.

 

The Possible Pod Failure, or “Do You Hear What I Hear?”

Judging by the title of this blog post, you might assume that I’m rewriting yet another Christmas song to make it about diabetes. Well, I’m here to tell you that is false – no more Christmas carol transformations for me! (At least, not until Christmas 2019.)

Rather, this post is all about an odd, kind of silly thing that happened to my mother and I when we were out on a walk with Clarence, my parents’ dog.

We both heard a high-pitched beeping coming from…somewhere.

We exchanged glances and my mom asked me if I heard that sound. I nodded, and we both sighed as we fished through our pockets for our PDMs. That’s because we both just knew that one of us was experiencing a pod failure, and that the pressing of a couple buttons would reveal who was about to become extremely annoyed.

FDCCCFA1-DF84-4419-9CCA-B332C4CCF0AD
My walking buddies, moments after the false alarm.

But both of our PDMs indicated that our pods were working just fine. Bemused, she told me that sometimes her PDM won’t recognize the pod failure right away, and it will be the pod itself that emits the beep-of-dread. So I started lifting up layers of my heavy winter clothing to see if my pod was making the sound, while she briefly stopped walking to listen closer to her pod.

After our careful scrutiny, we determined that…

…the beeping sound was actually someone using a weed whacker or some other piece of lawn-care equipment in the distance. Oops.

We continued our walk, chuckling a bit about it while Clarence pranced along in between us. It was a relief to know that we wouldn’t have to scramble home so one of us could take out insulin and a fresh pod to apply as soon as possible.

What’s the point of sharing this little vignette? To show that diabetes is such a significant part of our lives, always one of our first thoughts, even in the most mundane cases. It also illustrates how volatile diabetes can be – just like that, a random beep can change the course of the day and determine your next series of actions.

Just some food for thought, all triggered by a (literally) false alarm.

 

Diabetes and Technology

This November, I participated in the #HappyDiabeticChallenge on Instagram. This challenge centered around daily prompts to respond to via an Instagram post or story. I’ve decided to spread the challenge to my blog for the last couple days of National Diabetes Awareness Month. As a result, today’s post will be about diabetes and technology.

Diabetes and technology: a pair as iconic as peanut butter and jelly, Lucy and Desi, and Han Solo and Chewbacca. I can’t imagine managing my diabetes without all the technical tools and devices I have in my arsenal.

I’m grateful for all the tools we have at our disposal these days, because I know that this wasn’t always the case. I didn’t have to experience a time without a test kit. I didn’t have to deal with checking my blood sugar only once or twice daily using a complicated urinalysis system. Though I chose to take insulin via manual injections for many years, I had the option to try an insulin pump whenever I was ready. And when the CGM came around, approximately ten years after my diagnosis, I was able to start using this new technology.

Capture
Just a few of the key technological components in my diabetes toolkit.

So I guess that diabetes and technology makes me think of two, somewhat contradictory, concepts: privilege and freedom.

It’s a privilege that I have a wide array of technology available to me. I’m lucky that I’m able to use it, because I know that many people with diabetes in this world cannot afford it or do not have access to it. It makes me upset to think about how diabetes might be harder for these individuals due to a lack of treatment and care options, but in that way, it reinforces how freeing diabetes technology has been for me. I have the freedom to bolus quickly and easily as needed. I’m free from annoying tubing, thanks to my OmniPod pump. I’m free to live a life less interrupted by diabetes, because my technology helps me manage it with greater finesse than if I were doing it 100% on my own.

That being said, I won’t ever take my access to diabetes technology for granted.

I can only hope that, as technology innovations continue to improve the quality of life for people with diabetes, technology accessibility becomes more widespread, as well.

I Want to Love my Dexcom G6, but…

…this keeps happening on Day 9 of wear:

8C471733-1CC5-40D9-81D2-088D06A5B6D2

I don’t understand why the sensor error occurs. But it almost ALWAYS happens on the ninth day: My sensor will work wonderfully and provide me with extremely accurate data, but then BOOM it’ll sporadically stop working and produce graphs like the one above that are virtually useless. Even worse, there’s no telling when exactly it’ll start communicating again with my receiver. The error message SAYS I’ll get data back within 3 hours, and I normally do, but there’s a big difference between going 10 minutes and going 2 hours without any readings.

This device has so many good things working in its favor: longer wear, painless insertion, increased accuracy, compatibility with acetaminophen, slimmer profile. But I’m of the opinion that if something says it will totally function for a certain length of time, then it WILL. The fact that it doesn’t, and that this has occurred more than once to me, is alarming and frustrating.

The only possible explanation I’ve come up with is that maybe the upper arm isn’t a great place to wear the G6. As we all know, Dexcom devices are FDA approved to be worn on one location, the abdomen. However, that hasn’t stopped the cheeky diabetes community from wearing it elsewhere. Besides the upper arm, I’ve seen people with it on their forearms, thighs, and calves. I even know one clever person who chooses to wear it on the upper bum during the summer months to prevent tan lines (hilarious and brilliant, IMO). I choose to wear my CGM on my upper arm most of the time because it’s comfortable there, and I like to give the sites on my belly a break. But maybe it’s time I start wearing it more frequently on my stomach, the “officially okay” site, to see if that prevents these ridiculous sensor error scenarios.

What I’d like to know in the meantime, though, is has this happened to you or anyone you know using the G6? Has anyone pinpointed a cause, and is it worth notifying Dexcom of this issue? I’d love to hear your stories and thoughts – drop a note in the comments or get in touch with me directly!

A Not-So-Sticky Situation

There’s nothing worse than medical adhesive that just won’t stick.

If an infusion site or CGM sensor fails to stick to the body, that almost always means that there’s no choice but to dispose of it prematurely. And that is the definition of a total waste, which is a horrible feeling when it comes to exorbitantly expensive diabetes supplies.

So you can probably imagine my vague sense of panic when less than 12 hours after inserting a recent CGM sensor, it started to peel around the edges. Actually, that’s phrasing it a bit lightly – one half of it was practically flopping off my arm. No matter how much I pressed it back against my skin, it wouldn’t stick. I knew that I needed to save it somehow, and fast.

My first resort was a Patch Peel – it’s cut to accommodate the CGM transmitter; as such, it was the most secure option I had available to me. But seconds after applying the patch, it started peeling all around the edges. WTF?! It was definitely the same strong adhesive that Pump Peelz uses on all of their products, so I didn’t understand why it wasn’t sticking. I cursed under my breath as I racked my brain, thinking of anything else I could use to salvage the sensor. I couldn’t bear the thought of throwing it away after less than a full day’s worth of use.

c1d1cca3-498d-41d4-b703-88e9cfcd97b8-e1535137408367.jpeg
Smiling big with my salvaged sensor.

Then I remembered I had SkinTac, which is so strong and glue-like that I normally avoid using it. But desperate times call for desperate measures, right? I lifted up the edges of my patch and wiped the SkinTac all around my skin, patting the patch gingerly back into place as the SkinTac dried. And…it worked! My patch got wrinkly as hell as the adhesives bound together, but I didn’t care because I’d managed to save the sensor. Will it hurt in a few days when I peel off all those layers of adhesive? Oh yes. But I won’t mind at all because I didn’t have to waste a sensor with a retail value of about (cue the gasps) $165.

Favorite Things Friday: My Verio IQ Meter

One Friday per month, I’ll write about my favorite diabetes products. These items make the cut because they’re functional, fashionable, or fun – but usually, all three at once!

One of the most crucial components of a T1D toolkit is the glucometer, also known more simply as the meter. This little device instantly measures blood sugar levels in a person with diabetes: stick a test strip in the meter, poke a finger, and wipe a drop of blood on the test strip in order to get a blood sugar check within seconds from the meter.

Ideally, a meter is used multiple times a day by a person with diabetes – the exact number depends on how often they prefer to check their levels. Personally, I check my blood sugar five or six times each day, so I’m using my meter fairly frequently. As such, it’s always been important to me that I have a meter that is accurate, user-friendly, and compact.

Fortunately, I found all of that with my Verio IQ meter.

IMG_4393
I can’t imagine checking my blood sugar with any other meter.

The slim, bright white device fits nicely into my Myabetic case, making it easy to tote around with me everywhere. It’s pretty trusty and generates results commensurate with my CGM. It doesn’t run on batteries; rather, it can conveniently be recharged every 10 days or so. But my favorite feature of my meter is the back light: If I need to wake up in the middle of the night to check my blood sugar, I don’t have to switch on the lamp that sits on my nightstand. Rather, I merely stick a strip into the meter and it lights up on its own, making it easy for me to see where to wipe my drop of blood. After five seconds elapse, bam, my blood sugar reading pops up on the screen in bold numbers.

I can’t remember exactly when I started using my Verio IQ – definitely prior to college – but I’ve stuck with it for at least eight years now because it works so well for me. When I got onto the OmniPod three years ago, it never even crossed my mind to give up my Verio in favor of using the PDM to check my sugars. It might seem crazy to others that I carry around one superfluous device, but it’s what works for me.