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Posts tagged ‘dexcom’

Enjoy the Silence. Or Not So Much.

[Disclosure about my relationship with Dexcom]

During the first trimester of this pregnancy, lows were intense and weirdly symptomatic; a nice contrast from the hypoglycemia unawareness that’s crept in over the last five or six years.  (I ended up stashing a jar of jellybeans in the dining room hutch, only to have to move it into direct line of sight in the kitchen in efforts to keep up with the persistent low blood sugars of those first few weeks.)  As this pregnancy has moved forward, the lows have become slightly more predictable and the hypo-unawareness has returned, making the Dexcom BEEPS! and BLARGHS! more necessary.

Until that week when I noticed, “Hey, the alarms have been quieter.”  And then I realized, “Hey, the alarms aren’t working.”  Because overnight, my G4 receiver had been rendered mute.

When I received the Dexcom recall notice several months ago, it was very early February, and I was still using the G5 transmitter.  At the time, the only people who knew I was pregnant were my family and my medical team, but I knew, and I was stalking blood sugars with vigor (and a side of panic).  My endocrinologist, not a fan of the data output from the G5 application, asked if I would consider using the G4 for the remainder of my pregnancy.  Wanting her to check the “compliant” box on my chart (there’s a first time for everything), I switched back to the G4 the following week and have been on it since.

And for months, my G4 receiver was fine.  Alarmed all the damn time, vibrating and buzzing from my bedside table or my purse and alerting me to the changing needs of my baby-hosting body.  And then, all of a sudden, the speaker went full garbage, not working at all.  Only a vibration came from the receiver, making my phone* the best laid plan for alerting me audibly.

It wasn’t until I woke up one morning and saw the empty raisin box and the discarded juice box that I realized the night before wasn’t very comfortable.  And that I didn’t wake up because of alarms, but instead because of aggressive baby kicks.  I couldn’t ride out the rest of this pregnancy without replacing the receiver, because I was NOT waking up even with the phone alarms.  I needed high octane, receiver-in-a-glass-with-some-coins sort of jolting.  I needed to connect the alarms to Siah, encouraging her to walk across my face when I was low.  Or similar.

I needed the receiver to actually WORK PROPERLY.

So I went to the website – Dexcom has a special page set up for this particular issue.  There’s also a special hotline number to call: (844) 607-8398.  After a quick exchange with the woman on the phone, she asked me to confirm that my alarms weren’t working by doing the following:

  • press the center button on your receiver to access the Main Menu
  • scroll down to Profiles
  • select Profiles
  • scroll down to Try It
  • select Try It
  • scroll down to 55 Fixed Low
  • select 55 Fixed Low
  • verify that you receive vibrations first (vibratory portion of alarm), followed by beeps (audible portion of alarm).

And once we confirmed the alarm absence, a new receiver was scheduled to be shipped out.  Should be arriving in the next few days, in time for me to finish up this pregnancy as a G4 user (to make my doctor happy) and hopefully by staying in my threshold lines (to make my fetus happy).

If your G4 receiver suddenly craps out, sound-wise, call the hotline number and have a new one sent out.  Alarms that won’t alarm are alarming.

(* I follow myself on the Dexcom Follow app, along with one other person.  Yes, redundant.  In response to the dead receiver speaker, I changed the alarm settings on my phone so that I’d be alerted for highs and lows.  This worked, in theory, except when my phone was on silent or in the other room.)

Interview: Brian Nelson-Palmer, T1D Drummer of Fellowcraft.

If you were at the ADA Tour De Cure event at Freedom Plaza in Washington DC last September, you might remember this diabetes rant from the drummer:

He’s a group fitness instructor, a public speaker, and has a day job working for the government. And he’s also the drummer for the three-man, DC-based rock band Fellowcraft. Brian Nelson-Palmer is something of a Renaissance man, and he is also a person with type 1 diabetes.

Brian was diagnosed right around his fourth birthday, in 1987, and last night, he let me crash his evening via telephone interview.

“I’m not sure of the exact date, but it was really close to my birthday. I kind of consider it my 4th birthday present,” he said, reminiscing about his diagnosis. “I was going to the bathroom a lot, and I started wetting the bed. My mother suspected some kind of kidney issue, but after visiting the doctor, it turned out to be type 1 diabetes. So I was in the hospital for one night …”

“Wait … you were in the hospital for a night? Just one night?” I felt bad interrupting during an interview, but my diagnosis included not one, but two 12 day hospital stays back in 1986. Did a year between our respective diagnoses make all the difference?

“Yeah, a night, or maybe it was a few nights, wasn’t too many though. I remember hiding under the bed from the nurse. She thought I had run away, but I was just scared of the needles.”

Brian and I talked a lot about that transition from being diagnosed with diabetes as a small kid and growing up to take the reins of this disease from our parents.

“I started taking some care of myself, independently, in first or second grade. I would go to school and no one knew much about diabetes. My mom and dad knew a lot about diabetes, but out in public, I was the only one I knew who had it. My teachers didn’t know how to check my blood sugar or anything like that. So I needed to take care of things on my own,” he said.

“Did you use those old meters?”

“Yeah. Back then, each blood sugar check took two minutes on that old Accu-Chek meter. You had to put the blood on the strip, wait 60 seconds, wipe it off and stick it in the machine, wait another 60 seconds …”

“I remember that one. So you started gaining some diabetes independence in first or second grade. Was there a moment, or are there moments, where you felt that you were starting to assume big parts of your self-care?”

“The day I got an insulin pump was a big moment. I was 16 at the time, back in 1999, and I had one of the first Minimed pumps. I jumped on that bandwagon and I loved the independence. I could go to a friend’s house to sleep over without having to pull out syringes.”

“Did you feel like the syringes earned you some weird looks?” I asked.

“It was more of a desire to be ‘normal.’ Whenever I pulled the needles out, I got attention and I often tried to shy away from that attention. It wasn’t that I hid diabetes. I didn’t mind if my friends saw things I was doing and asked me about it, but I didn’t want it to be a big deal.”

“But music was, and is, a big deal. Talk to me about where the love of music came into play.”

“I’ve been on and off with music my whole life. I was in band through school – played drums from 5th grade all the way through to Florida State. But then I took a break from music. I branched out from drums and tried other activities in college and then graduated and got a ‘real job.’ Twelve years after I put the sticks down, a friend, JR MacDonald, texted me one night and said ‘Hey, I’m starting a band. You in?’ And it went from there. Even with a twelve year hiatus from drums, I picked them up again that night and started right back up.

image from Fellowcraft FB page

“And that became Fellowcraft.”

“Yeah.”

When Brian and I connected yesterday morning, he sent me a link to their album, Get Up Young Phoenix, and I spent the day listening to it. Some really good stuff on there.

“We call it rock, it’s really a fusion of blues, funk, and rock together. It’s fun for me because I am formally educated through the public school system in all types of music and percussion. Now, just like back then, I don’t just play square rock beats. Like the song A Thousand Sunsets – it started out as a really slow ballad and we noticed that it did great at one show, but at other shows it became the bathroom break for people, or the moment when people went to get a drink at the bar. It didn’t have the energy and excitement that people seemed to want. In rehearsal the next time, we changed it up and I tried a bossa nova beat. We called it ‘the remix’ for a while, and it quickly became the regular version” He laughed. “My high school band director would be so proud.”

“You’re on stage, playing and doing your job, and diabetes is there in the background the whole time. How has diabetes influenced your experience as a musician?” I asked.

“Diabetes doesn’t affect my life as a musician. That’s the wrong order. It’s about preventative care. I have a Dexcom G5 so I can see where my blood sugar is and where it’s tracking. And when I’m onstage, I can’t check my Dexcom, so I need to start in a good place. The crowd doesn’t see what I’m doing and I don’t want it be part of the show. People come for the music, not for the diabetes.”

“So you wearing a Dexcom and are you also wearing a pump, still?”

“For the pump, I wear the t:slim,” said Brian. “Thanks to some insulin resistance, the 300 u reservoir is necessary and … well, I’m a technology guy. It’s a touch screen, it has a color screen, and it’s faster to input everything. The t:slim takes less time to be a diabetic. That and the Dexcom … their products make it so much easier to be a diabetic and to do what I do.”

image from Fellowcraft FB page

“Thanks for talking with me, Brian. I’m excited to see what’s next from you guys. Any parting words for the diabetes community?”

“It’s not going to stop you,” he said, his voice firm but friendly. “Whatever your goals are for life, you can still achieve them with diabetes. I pursue anything and everything that interests me, which is why I do so much. I consider myself fortunate and lucky to have found two of the best guys, JR Macdonald and Brandon Williams, to pursue my passion for performing music with. If you find that kind of fortune or passion in your life, go for it and don’t look back. Diabetes is a part of you, but it doesn’t define you. You define you.”

Proof positive found in Fellowcraft. To check out more of what Brian and his bandmates are doing, you can visit the Fellowcraft website. Or follow them on Twitter, or through Facebook. And if you’re addicted to Spotify, like me, you can listen there.

Switching to the t:slim Insulin Pump.

This will not be a post about what insulin pump is better for YOU.  I’m not a soothsayer (though every time I say that word, the mental image of a knight slaying a dragon made entirely out of teeth is hard to shake), so keep in mind that this post doesn’t include as many facts as it does opinions.  Also, don’t take any of this as medical advice, because I’m not a doctor.  I can’t even drive a stick shift.  Consider your sources, please.

Securing my bias lens even further, please read my recent disclosure about my agreement with Tandem.

All that official throat-clearing out of the way, let’s do this.  Because I switched insulin pumps for the third time a few months ago, and it’s been a good change for me.  (If you want to read more about the how and why of switching this time, that’s in the disclosure post.)

Get Off My Lawn Stuff (Known Formally As “Cons”)

I did multiple daily injections to administer my insulin for seventeen years, and switching to a Medtronic insulin pump back in 2004 was jarring because it was a big change to my daily routine.  Going from carrying syringes to wearing a device 24/7 was a switch.  But even after adjusting to the Medtronic pump, every subsequent change to my hardware, however small, felt like a big deal.  Switching to the Animas pump was hard not because the pump was that different, but because the clip was different in the most infinitesimal ways. It drove me bananas making the adjustment.  It took a good month to adjust to how the Animas pump clipped to my clothes.  Big deal?  No.  Big difference?  Nope.  But big adjustment?  Hell yes.  Any insulin pump that I wear is with me all day long, in every imaginable situation, and every single human factor of anything must be taken into account.

When I tried out the t:slim a while back, just to see how I like it, four things struck me as annoying:  the process of filling/priming the pump, the luer lock/pig tail system, the assumed fragility of the pump, and the pump clip. The technology was new and exciting, but I kept hitting myself in the face with it … metaphorically.

Back when I tried the pump, you had to install an empty cartridge and then fill it once it was loaded into the pump, but updates have made it possible to pre-fill the pump cartridges, making the process slightly less annoying.  The time it takes to prime the tubing is longer than that of the other tubed pumps, but I usually change my pump out after a shower, so it’s not inconvenient to spend an extra minute at the bathroom counter while the tubing fills.  An odd quirk is the recommendation that the pump be tipped up with the tubing facing up and the tubing extended while it filled, but this made sense to me and I actually started doing it with my Animas pump when I filled it, too.  (Brings any air bubbles to the top of the cartridge and pushes them out.)  Overall, the prime/fill process is a little cumbersome and at first it drove me up a wall, but now I’ve adjusted.  Ish.

The luer lock is not new (Animas has a luer lock system) but the lock itself being two inches (or so) away from the pump itself has made for some awkward under-the-dress-or-shirt lumpy bits.  It’s not the biggest deal, but for the first week or two, this change was frustrating and I felt like my tubing had becoming a permanent, and migratory, third nipple.

But the pump seems a little more delicate than other pumps I’ve used before.  I’m not easy on technology, and many of my daily activities usually include interacting with my five year old daughter, traveling, and changing my clothes in a closet that is tiled and the tile in our new house is apparently impossibly hard.  (Using the 42″ tubing for my infusion sets makes my pumps into yo-yos.)  Every medical device I’ve ever owned has hit the floor multiple times either in the bathroom, the kitchen, the airport TSA lines, etc. I do not go gentle into … anything.  In my short time with the t:slim, I’ve scuffed the ever loving hell of of the edge of the pump.  For a few weeks, I thought this pump was more fragile than others I’ve had in the past, but it turns out (after inspecting my stash of medical devices) I’ve destroyed the edges of every pump, ever. So the fragility of the t:slim, in my case, is assumed.  And I remain a bull in a diabetes closet.

The last frustration I had with the t:slim when trying it out and then switching was the pump clip.  See the previous paragraph for my brutish behavior when it comes to devices, but I felt like the clip couldn’t stand up to my clumsiness and awkwardness. This was a deal-breaker for me when I tried the pump, as I need to be able to wear it effectively.  BUT WAIT!  This particular con turned into a pro, so I’ll lead with it for the next section, which is the PROS section of switching.

Stay On My Lawn Stuff (Known Formally As “PROS”)

So the clip – THE CLIP!  A solution was found, but not a medically blessed one, so don’t make any fast moves without consulting with your doctor, and your neighbor, and the post office lady, and god.  But there is a clip that I bought on Amazon that, when applied strategically to the back of my t:slim in such a way that does not cover up any pertinent medical information (like the phone number for Tandem Care, etc.), it fixes the pump clip conundrum for me completely.  It’s totally a “to each their own” sort of gig, but I love wearing the pump in a streamlined, secure manner like this, and the wearability is completely badass.

T:slim with clip

A photo posted by Kerri Sparling (@sixuntilme) on

Another thing I really like about the pump is how updated and streamlined it looks.  These things cost, what – $5,000? – and they should damn well look like they cost a pretty penny.  I like that my insulin pump looks like the sophisticated medical device it is supposed to look like.  Sure, looks don’t trump functionality, but it doesn’t hurt that this pump works well and also looks smart.  Call me superficial.  Go ahead.

With that sexy look comes functionality that I had been craving (which makes it sound like a delicious grilled cheese sandwich, in which case … hang on … brb).  I wanted a pump that did what I needed it to do without having to press 10,000 buttons along the way.  Like the temp basal feature.  Temp basaling (a verb, to be sure) is my favorite way to combat lazy, slow lows that don’t necessarily require a snack but do require some kind of gentle intervention.  For example, if I’m 70 mg/dL and trending flat with no IOB before bed, I may do a temp basal for 30 minutes in order to bring me back up into the 85 mg/dL range.  Setting up a temp basal on the t:slim is extremely easy and takes a matter of seconds.  I appreciate that.

The temp basal rate to gentle smash a low is my favorite. #diabetesgram

A photo posted by Kerri Sparling (@sixuntilme) on

Integration is a plus with this pump, although integration is a frustrating topic all on its own because companies never seem to be on the same page for long enough.  (Project Odyssey might help change that, allowing software updates to replace hardware ones, i.e. downloading updates from your computer to your pump,  and I’m excited to see that move forward.  More on that once there’s more on that.)  But as it stands now, the t:slim is integrated with Dexcom G4 technology.  I am pro-options and prefer that patients have access to what they want, so I tried out the integrated system to get a feel for how the technologies worked together.  Overall, the user interface for CGM is really nice and a huge upgrade from other systems I’ve seen (CGM results are on the home screen, trend arrows are there, too, and the X axis is more than an inch long).  The CGM alarms on the pump are loud enough to hear while I’m sleeping, and the hypo repeat option worked irritatingly well on the overnight (stupid lows).  The integration seems solid and streamlined.

CGMed. #slightlylatergram

A photo posted by Kerri Sparling (@sixuntilme) on

But … I like Dexcom Share.  And having Share as an option is essential for me, with my work and travel schedule, so I decided to bounce between the G4 and the G5 technology in whatever way fits best week-to-week.  In order to Share while using the t:slim as my primary CGM screen, I need to use my G4 receiver for cloud uploading.  That’s clunky (and also required me ordering a G4 receiver since I had already updated my previous G4 receiver to the G5 technology … see also:  regret) and the G4 receiver I ordered is borked, so I switched back to G5 for the time being in order to continue Share.  This is a long, kind of boring paragraph, the point being that the integration is great, but Share options suffer, so know what you’re getting into and also what you expect.

One other point re: the t:slim with G4:  When I decided to go back to G5, it took a full 24 hours for the home screen on my t:slim to stop showing the CGM graph.  I was confused as to where the option to “turn off CGM” was on the pump itself, but it turns out that the screen automagically reverts to regular t:slim mode once the 24 hour window is up.  Useful.  

Also (unrelated), the little “change sensor” icon on the screen looks like a bottle of champaign and a clock, making it seem like New Year’s Eve on your pump for 24 hours.

A photo posted by Kerri Sparling (@sixuntilme) on

I also like how quickly I can take a bolus.  The audio bolus is loud (and the disco boobs are in full effect for those sorts of moments, so turn that shit down if you’re feeling demure), and I’m a big fan of the audio bolus.  The bolus screen is different on the current iteration of the t:slim than the one I first tried out, allowing me to put in a number of units without forcing me to enter a BG or carb amount.  I know I should be taking advantage of all the options available to me on this technology, but sometimes I just want to take a unit of insulin and not jump through a dozen hoops en route to bolusing, so streamlining this process is a plus.

A photo posted by Kerri Sparling (@sixuntilme) on

These are just some first impressions, but there’s always a learning curve with new tech. As the weeks go by, I’ll have experience with the more advanced features and will have tinkered around extensively with the device, but at first glance and first few weeks, I’m deep into techno-joy once I stopped being scared of the change itself.

Kind of like this:

View post on imgur.com

It feels like a device company has taken my diabetes experience and given it an overhaul. One that was sorely needed after almost 30 years with type 1 diabetes.

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