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Posts from the ‘Robot Life’ Category

Changing the Set.

Changing out an insulin pump infusion set is a methodical moment for me. I do things in the same order almost every time, with the same mildly frenetic mindset.

  • Remove old set from my body so I can enjoy the “connected to nothing” feeling for as long as possible.
  • Take out a new infusion set and new reservoir.
  • Ferret out the open bottle of insulin from wherever I’ve stashed it last in the bathroom.  (Usually it’s in the medicine cabinet, but during the hotter months of summer, I tend to keep it in our bedroom, where it’s cooler.)
  • Line the insulin set, reservoir, and bottle up on the counter.
  • Unscrew the reservoir cap and remove the old infusion set and reservoir from the pump.  Throw the tangle of tubing into the garbage, making sure said tangle doesn’t dangle over the edge of the garbage can because otherwise Loopy and Siah will find it and drag it all over the house.
  • Open the packaging for the reservoir and take out all the little parts (except that one frigging thing that I don’t know what it’s for and I usually throw it right into the garbage – see below):

  • Rewind the pump.
  • This is the point where I mentally set some kind of timer, challenging myself to race against the time it takes for the pump to rewind.  While the pump is whirring, I rush to fill up the reservoir and connect it to the tubing.  I do this every, single time.  It’s as satisfyingly ritualistic as shaking the bottle of test strips before I check my blood sugar.
  • Thread the tubing through the battery cap and connect the luer lock, then insert the cartridge into the pump.
  • Load the new cartridge.
  • Prime the cartridge, trying to stop the prime before more than a single drop of insulin escapes from the needle in the infusion set.
  • Hold the tubing up to the light and inspect it for bubbles.
  • After the pump is primed, again the mental timer is set.  This time, the challenge is to unpeel the sticky backing from the infusion set and find a place on my body that’s suitable for insertion before the screen on my pump goes blank from inactivity.
  • Insert the new infusion set, prime the cannula (sort of holding my breath while it primes because I’m never certain that the first introduction of insulin won’t burn under my skin).
  • Tuck the tubing out of sight and clip the pump to my clothes.
  • Fin.  (As in “the end.”  There’s no marine life actively involved in this process.)

This process takes less than two minutes to complete, but if it’s interrupted in any way, I’m thrown so far off course that it takes me five minutes to recover.  The method of this madness is that it’s one, fluid mental movement and any upset to the process makes my brain disengage to seek the comfort of something shiny.

It’s an intricate process involving several steps, precision handling, and the safe housing a powerful drug.  And if I have to change the battery at the same time …

 

Not A Single Decent Number.

“Huh.  223 mg/dL.  Still.”

This was the mumbled mantra of our vacation to Maine.

Aside from the long drive to Bar Harbor (six hours, plus coffee stops and bathroom stops and “Hey, look at that lobster!” stops), the time we spend in Maine is usually very active.  As a family, we did the hike around Jordan Pond (about 3.5 miles), the hike up South Bubble Mountain (with a stop at Bubble Rock), and spent hours walking through downtown Bar Harbor.  The lure of blueberry ice cream was enticing, but I tried to avoid the sweets and instead downed buckets of iced coffee instead.

And yet my blood sugars were complete shit while we were traveling.

I wanted to blame my infusion set, but I changed it once while we were in Maine and my blood sugar numbers remained crap.  I wanted to blame the bottle of insulin but it was the same bottle that worked just fine at home (and it wasn’t like we microwaved it or let it bake in the car).  I wanted to blame my own actions but I was exercising, checking my blood sugar, pre-bolusing for meals, correcting highs, and sticking with reasonable carb intake.

So I blamed diabetes.

The graphs over the four days we were in Maine were gross.  When I wasn’t high (which was the majority of the time), I was erring on the side of high, teasing the edges of 160 and 180 mg/dL all day long.  Why?  No clue.  Hesitant to up my basal rate in the face of constant walking, I just watched the graph ride the mustard for a few days.  Not convenient, because blood sugars running higher means more water, more “Hey, it feels like someone put cement in my sneakers,” more teeth sweaters, more bathroom breaks.

“Mom, do you have to go potty?”

(Fun when the four year old is asking me, instead of the other way around.)

Sometimes the numbers don’t make sense, and this time, I choose to roll with it for a few days.  There are probably six dozen different things I “could have done” to take a bite out of the high blood sugar trend, but I didn’t want to the micromanagement of diabetes to eat up my brain on vacation.  Instead, I did what I was willing to do and thankfully, now that we’re back at home, my Dexcom graphed has settled back into a more forgiving pattern of Pac-Man dots.

I prefer mountains in the landscape, not in my Dexcom graph.

 

 

Whoa! Woe.

First this:

Then this:

So whoa!  Much woe.

The Dexcom / Mac Dance.

Sharing, because that’s what friends do.

Brian Bosh, living with type 1 diabetes and also apparently a very clever guy, found a workaround for uploading Dexcom G4 data to a Mac computer. Yes, you read that correctly.

“I created Chromadex because I was trying #DIYPS but hated carrying around a second phone. I figured I was close enough to a computer enough of the time that I could run an uploader on there and it would work well enough. There already is an uploader for Windows and Android, but no way to do it on the Mac. (Or Linux for that matter.) Once the uploader was built, though, I thought it really ought to do some of the same things Dexcom Studio did, since that’s not available on Mac either: If I had the data, I might as well offer their reports too. At this point it will upload to #DIYPS, NightScout and run three reports. It still takes a little bit of wrenching to get it to upload and I’d like to make that easier. Had a few people ask if I could make it work with MMOL. I’d like to get more reports working.”

I haven’t downloaded my data yet via this application, but others have:

If you want to try it for yourself, visit the Chrome web store and download Chromadex for free. And if you like how it works, please thank Brian.

#wearenotwaiting

Clouding on the Road.

The CGM in the Cloud concept matters most to me when I’m traveling alone.  While I was in Orlando last week, my bedside table looked like this at night:

A Moto G hooked up to my Dexcom G4, sending CGM data to the cloud.

And that data being routed to my family back in Rhode Island and to my wristwatch.

A few questions I heard from people throughout the conference:

“What peace of mind does it give you that the CGM itself doesn’t?”

I slept better with this thing rigged up.  It’s a clumsy set-up (all those cables and wires and plugged-in-ports) but the ends justify the means.  Chris could see my data while I was sleeping, and his system would alert him to any wicked overnight hypos, should they occur.  That’s some good peace of mind for me when I’m a plane ride away from my support system.  While my overnights are usually unnervingly spot-on (nailing down my overnight basal has been the luckiest break ever, and I blame my in-range A1C on spending those 6+ sleeping hours in-target), low blood sugars still creep in and can cause chaos.  I liked being hooked up while I was sleeping.

“Why wear it connected throughout the day?”

It was more convenient than I thought to have the graph running on a watch.  I didn’t realize how often I go digging through my bag for my Dexcom receiver until I spent a few days not doing that.  I like the seamless flick of the wrist and the “Hey, that’s my number,” and moving one sentiment.  But, to be honest, I think I kept it hooked up during the day partly because I knew people would have questions/want to see the rig and I wanted to be able to show them. Nothing answers questions better than seeing the system “in the wild.”

“Why don’t you wear it all the time?”

What made it less convenient to keep the system “clouding” on this trip is that I haven’t purchased a data plan for the Android phone yet, and have been running it off of open wifi signals (the hotel, convention center, restaurants, etc).  That’s a definite hurdle, and since the system is most important for me to run while I’m sleeping during travel (or home while Chris is traveling), using wifi seems to work best for my needs.  It’s simple to connect/disconnect from the cloud system as I need to.  I’m also hesitant to tax the USB port on my Dexcom receiver because I don’t have a spare receiver and I also don’t want to break the device I have come to rely on.

“Do you really want your family seeing your numbers all the time?  What about your privacy?”

Really good question.  This is why I’m looking forward to the Dexcom Share application, because that app will allow me to revoke access to my data if I choose.  As it stands now, my CGM data is clouded to a site that I have shared with my husband and my mother, and if I’m hooked up to the CGM in the Cloud system, they have access to my data.  It’s not a password-protected application.  I would love to see the data protected by some kind of password system.  I appreciate the option to share the data for my safety, but not for their scrutiny.  However, when it comes to the overnights while I’m traveling, I don’t care who sees those numbers.  Their having access makes me feel less vulnerable, and I’m willing to sacrifice my data privacy for those 6+ hours.

Clouding CGM data is a work-in-progress.  Much like life with diabetes.

#wearenotwaiting

 

 

Giving Diabetes the Finger: iHealth Winners!

(Technically, the post title should be “what finger do you use for diabetes?” but it doesn’t have the same zing! to it.)

Earlier this week, I posted about the iHealth meter giveaway and asked people to answer the question, “Which finger is your go-to one for blood glucose checks?

Give the middle finger to diabetes HA HA HA HA HA HA jokes are funnyWe only had ten options to choose from, so the answers unfortunately couldn’t get too weird.  (Unless you’re old school and remember testing earlobes.  I learned that at diabetes camp.)  The finger-most-favored, by far, was the ring finger, with the middle finger as a distant second place.  Pinkies had their own fan base, and thumbs were the only fingers that received a “Oh, heavens no!  Never my thumb!” sort of response.  (As a community, we are somewhat ambivalent about our index fingers.  Except maybe to point and say, “Can you grab me those glucose tabs?” or “Yes, I can eat THAT.”)

When I examined my hands, it became clear that I was a ring finger/middle finger frequent tester, like many of you guys.  The middle finger just seems appropriate, you know?

As Hilary so eloquently stated:  “Right hand middle finger. It’s a big *@! to TD1″

The winners of the iHealth glucometer giveaway are Binay, Danielle, and Mark B!  Congrats, you guys.  I’ve sent you an email to coordinate mailing out your stuff.

Thank you for entering!

 

Go Bionic: Ed Damiano, Clara Barton Camp, and How the Bionic Pancreas “Really Works.”

During my visit to Clara Barton Camp yesterday, I heard the same sentiment over and over again from the kids wearing the bionic pancreas:  “It works.”

“It was weird not to touch the buttons when it beeped,” Addy said, an 11 year old camper at Clara Barton Camp who has been living with type 1 diabetes since she was two.  “I’d reach down to look at it or touch it when it beeped but then I’d have to remember not to touch anything.”

“A big change from needing to check every beep and look at the devices all the time, right?  So when did you feel like you were used to wearing it?”  I asked her.

“Yesterday.  Yesterday, it beeped and I didn’t reach down.  I just said, ‘Whatever.’”

“You trusted it?”

“Yes.  I trusted it.  It works.  If you check it, it’s perfect.  My blood sugars are perfect.”

Addy has been wearing the bionic pancreas since Sunday, part of  the Bionic Pancreas study taking place at The Barton Center (and also the Joslin Camp) this summer.  She’s one of thirteen campers at Barton taking part in the study, ages ranging from six to 11 years old, six girls suited up with the bionic pancreas last week and seven this week.  “My blood sugars have been perfect – I haven’t been low at all and I haven’t been high, except for one 203 mg/dL.”

If a week without blood sugar excursions sounds like an impossible dream, take heart.  Take pancreas, too, because this technology actually exists and is currently attached to seven girls in Massachusetts.  And not “seven girls stuck in a hospital bed under strict activity guidelines,” but seven girls who are running amuck at camp, swimming, dancing, singing in the dining hall, and burping at picnic tables outside of the cabins.  The bionic pancreas has been highlighted in the New York Times, NPR, chronicled extensively over at diaTribe, and has also been the subject of a frequently-downloaded-and-rabidly-shared New England Journal of Medicine article.

The system has a few moving parts:  two t:slim insulin pumps with the Bluetooth switched on for communicating with the phone (one filled with insulin and one filled with glucagon), a Dexcom CGM, and an iPhone.  An in-depth look at how the technology works together can be found in the NEJM paper, but the basic gist is that the Dexcom monitors blood sugars and sends that data to the iPhone, which is running an algorithm that doses insulin, glucagon, or refrains from dosing anything at all.  Lows can be corrected by glucagon, highs by insulin.  Meals aren’t carb counted, but instead the algorithm “learns” what a big meal, small meal, or snack is based on minimal input from the PWD.

“It’s beautiful,” I said to Ed Damiano, one of the principal investigators on the project, after seeing some of the blood sugar outcomes from previous studies.

“It’s still a little clunky,” he replied.  “I want to see one device, one infusion set.  But this?  It works.”

Currently, the camp study at Barton has girls on the full bionic pancreas system for five days, and then five days on their own insulin pump, but with the CGM blinded to the user and still uploading to the cloud.  Bionic pancreas campers are required to check their blood sugar at least seven times per day.  Due to camp safety protocols, the study team can’t let low blood sugars “ride” and assume that the bionic pancreas will step in with glucagon in time, so success on some levels isn’t judged by minimal time below 70 mg/dL but instead the reliable metric becomes how many times did the study team need to intervene for a low blood sugar.

This summer, there are a few new features on the bionic pancreas.  One is “microburst glucagon,” which is most useful for when people are disconnecting the system for swimming or similar, in efforts to provide a safety net for low blood sugars while doing that kind of activity.  There is also an option for temporary targets, which allows people to adjust their target thresholds.  “Normally, we aim for 100 mg/dL, but if we can adjust the threshold and show a change in the A1C based on that adjustment, we’re able to titrate A1C levels using the bionic pancreas,” said Ed.

Some challenges still exist with the system.  The bulky devices, for one, are their own challenge, but as the project moves forward, the diabetes community rallies to support current needs.  “Donna from Tallygear came up and made these ‘GO BIONIC!” belts in a matter of 48 hours.” Ed said, smiling.  “We didn’t ask her to do that.  She offered, and we are so grateful because the kids love them.”

The kids sing the praises of this device.  Ally, diagnosed in 2009 at the age of five, wore the bionic pancreas the week before Addy suited up. “It really works. When I saw the video online, I thought it was made up. I thought the girl in the video was lucky, and that her numbers were just perfect that day. And then I wore it [the bionic pancreas] and I was like, ‘Wait … it really does work!’”

Addy chimed in, her bionic pancreas belt visible over her shirt:  “Ally wore this last week and now I’m wearing it.  She said to me, ‘If you don’t want to wear it, can I wear it for you?’”

Ally nodded.  “I did say that.”

“Does the weight of the device bug you?”  I asked Ally.

“No.  It’s a little heavier but I don’t care.  Even with all the pumps on and the phone, I could still do a back-handspring in the grass.”

The study at Barton concludes this week and then moves over to the nearby boys’ camp.  But after this study finishes, there is still work to be done.  The amazing bionic pancreas team has come so far and the 2016 pivotal study is in sight, but needs community support to get there.

This is where the Bionic Challenge comes in.

According to the website call-to-action:  “The Bionic Challenge asks each family to raise $5,000 in 60 days (by September 1, 2014). If each family in attendance here today can turn to their friends and relatives and obtain 50 $100 donations (that means finding only about one donation per day for the next seven weeks), we can resume our development effort in September and keep on schedule for our final pivotal study in 2016. If we cannot resume in September, it could jeopardize our ability to secure a recently announced time-limited $20MM NIH funding opportunity, which is due in about nine months (April 15, 2015) and could support all of the clinical costs of our pivotal study.”

tl;dr:  the project needs the support of the diabetes community because, without it, the goal of a 2016 pivotal study may be delayed. If you can donate, please do. If you can’t, please consider sharing this information with someone who can. The more people who know how to help, the better.

After being promised a “cure in five years” back in 1986, the idea of the bionic pancreas being delayed because of money makes me feel insane. I could understand a delay if the technology wasn’t up to snuff, but to delay due to funding is unreasonable.  I saw kids playing outside yesterday afternoon, running around and laughing and having fun and the burden of diabetes seemed only as heavy as the belt around their waist, which with time and technology becomes smaller and lighter.

“I look at diabetes as management and maintenance,” said Ed, as we sat in the Barton Center bionic pancreas command center, where the study team was hard at work monitoring the campers blood sugars from the cloud.  “The maintenance part is the changing of an infusion set, the changing of a sensor, the checking of blood sugars.  The management part, to me, is the emotional part of diabetes.  The fact that you are so often told that you’re ‘wrong’ because you’re trying to thread the needle.  This device doesn’t take away from the maintenance part because it still requires that you wear something, do something, change something.  But it does make the management part smaller.  So much smaller.”

I don’t know if a biological cure will be seen in my lifetime.  I was diagnosed with type 1 diabetes in 1986 and have been living well, but not without frustration, as a host to this disease for almost 28 years.  My perception of what a “cure” is has changed as I’ve grown older, and my hope for something that takes this disease away fades with time.  But seeing the bionic pancreas at work, around the waists of children not much older than my own, and watching the worries of diabetes lifted from their minds and the minds of their families, I feel renewed hope.  More hope than I’ve felt in a long, long time because this is real.  I held it in my hand.  It filled me back up.

Because it works.

You can follow the progress of the bionic pancreas on the Bionic Pancreas website and “like” their Facebook page for more updates.  Links to articles featuring the bionic pancreas are here , and this video shows you how, and why, the bionic pancreas works:

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