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Posts from the ‘Robot Life’ Category

Rasharoni.

As this pregnancy continues on, so does the rapid rounding-out of my abdomen (today’s issue = not being able to zip my jacket without over-taxing the zipper). Feeling quite like Violet Beauregard from Charlie and the Chocolate Factory.

Pluses to this expansion are that a. the pregnancy is progressing on schedule and b. the real estate options for my pump site and Dexcom sensor are literally broadening.  Which is useful, since my adhesive rash is in full rawr mode.

In response to rashes that are taking weeks to heal properly (they aren’t oozing or anything gross, but a particularly cold day or a too-hot shower will make the area where the sensor and any tape was get madly scaly, red, and itchy), I’ve needed to really mix up where my diabetes devices are applied.  I put a sensor on my lower left-side abdomen for the first time in almost a decade and it hurt like hell going in but did not leave a residual rash when I removed it.

New skin holds up better than my favored spots, but with only seven days of wear and an aversion to abdomen sites, it’s getting tricky.  At the Friends for Life Falls Church conference in DC this past weekend, there was discussion in several groups about rash strategies, but I can’t recall everything that everyone said.  (If you have tips on dealing with skin irritation, please share them!)

I am seeing a dermatologist again this week to see if they can offer any relief/advice/assistance, so there is hope.  For now, Toughpads, DermaSarra lotion, and site rotation are my best defense.  Because hope remains an itch I refuse to scratch … especially when there are so many other bits of me that need scritch-scratching.

Open the Door.

For several weeks, I was flipping open the charging port on my t:slim insulin pump and plugging it in while I was in the shower.  But then I noticed the charging port cover was looking a little worse for the wear, and I connected with a friend about best practices.  (“Best practices” standing in for “How the hell do you charge this thing without breaking the door off?”)

Turns out the door swivels.  And swiveling the door keeps it from ripping.

Swivel that door! #tslim

A photo posted by Kerri Sparling (@sixuntilme) on

Well I’ll be (… more careful, more aware, a swivel-er).

(Also, you tell me if “Open the door” as a post title immediately made you think “get on the floor … everybody walks the dinosaur.”

 

[Tandem disclosure]

 

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.

Bionic Pancreas Update and Call to Action.

A few weeks ago, I met with Ed Damiano and we spent an afternoon talking about recent developments in the bionic pancreas program and what’s up next.

“Here’s our new device,” he said, placing the iLet on his desk, inadvertently putting it right next to his cell phone, which didn’t look much bigger/thicker by comparison.  (I asked for a quarter for comparison, because otherwise this thing could look as small as a whisper, or as big as a toaster, depending on how you feel about devices that day.)

“It’s pretty.  In that device sort of way.  So this is the single device, right?  No more two pumps, one CGM receiver, etc?”

“Yes.  We have two different cartridges in this single device – one for insulin, one for glucagon – that will absolutely not fit in the wrong way.  You can’t make a mistake; there’s no cross-channeling.  The cartridges are already filled, so they aren’t dealing with air bubbles.  There’s no LCD in this device, as that contributes to the bulk, and the e-ink screen [similar to that of an Amazon Kindle] has good contrast and good resolution.  It also has capacitive touch.”

I’ve seen the older device in action at Clara Barton Camp last summer.  It was amazing to hear what little kids thought about wearing three different devices.  But one device should be easier to tolerate, especially when your blood glucose is in range as a result.  So what’s the next step?  How does this thing go from on your desk to on my hip?”

“The iLet exists because of donations from people who believe in this project.  We want to build the consumable parts of this within the next nine months – that’s the infusion sets, tubing, and caps.  We’re on track to do that if we can get the money raised throughout the end of this year.  1.5 million is our 2015 goal.  The next big goal is to test in clinical trials by the last quarter 2016.”

“Tell me more about the clinical trials?”

“Trials will take place in four different sites, out-patient study that’s several weeks long.  It’s a bridging study that goes from the iPhone-based system to the iLet – helps pave the path final pivotal trial.  The pivotal trial takes us straight to FDA submission.  Each study substantiates and builds confidence between investigators and agencies.”

As a person with diabetes, it’s weird to be reminded of many hands are involved in allowing access to technology development and release into the wild.  And how much money is required.

“Can you show me how far we’ve come?  I saw the new iLet device at Friends for Life this summer, but some perspective would be awesome.  What did the first iteration look like?”

Ed’s team kindly dug back into the archives for this photo, which shows the old laptop-based system attached to a study participant.  (And for another old-school take, you can read Abby’s experience with the clinical trials here and here.)

From a team and a laptop and tubes and wires to a single device.  This is the kind of progress that excites me, because it’s happening NOW and the results have already changed lives.  After close to thirty years with diabetes, I’ve seen progress that has made insulin delivery easier and glucose monitoring easier, but the bionic pancreas is a whole new and astounding shift towards life with diabetes.

“And once it’s all said and done, there will be a device similar in look and feel to what I’m using now, only it will be a closed loop.  Which means the pump and the sensor talk to one another, and work with one another independent of my interaction.  Which means I don’t have to think about diabetes nearly as much.  Maybe not much at all,” I said to Chris, all in one breath, when I got home.  “I’m excited.  This is exciting.  I haven’t been this excited in a long, long time about diabetes.”

I believe that the bionic pancreas technology will make my diabetes less of an intrusion, ripping the dangling preposition “with diabetes” off of my life.

To learn more about the bionic pancreas program, please visit the website.  And if you believe in this mission, please consider making a donation to the project.

 

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