Sunday, January 12, 2014

It's been a day short of two weeks since I last posted.  I've changed sets seven times since then (seven site changes in 13 days... not exactly 1 change every 3 days!).
I had one more quick set fail (it gave a "No Delivery" alarm the first time I tried to bolus with it, and kept "No Delivery"ing so I pulled it), and one quick set that worked.
I had one silhouette that worked and one that failed (it gave "Motor Error" when I tried to bolus, and I thought the pump itself was broken but the minimed people tell me it was the site).
I had two sure Ts that worked, one ripped out, and I just inserted my fourth sure T. 

Of the sites that DID work, all have been getting pretty itchy and the sites have hard lumps at them when I remove the sites.  It seems to take about a day for them to get itchy.

The CGM portion continues to work fine. I've changed sensors twice since my last post- I changed sensors almost immediately after the post when the sensor went lost. I realized that it seems like when I restart a sensor, they go "lost" 1-2 days later, so I tried with the next one to take the transmitter off and recharge it and see if that helped. It did, but the numbers went wonky a few days later (not in the showing low when high or vice versa category, more like showing 300s when I'm 200s and showing 50s when I'm 90s kind of thing), so that one I wore for ten days.  And the sensors have not been itchy or painful more than extremely slightly- compared to the pump sites they really are not any problem at all.

I am using Novolin R in the pump, and I know that even if I use twice as much Novolin R as on shots, my insulin cost is still down compared to using Lantus because Lantus is expensive (btw, the Brazilian gov't just decided to stop paying for Lantus in light of Sanofi's increase in prices + lack of proof that it does anything better than NPH).
However, it still kind of bugs me how much Regular I'm wasting on priming sites and cannulas and how much more insulin I seem to be using. People told me that on a pump I would have a lower total daily insulin usage. My pre-pump total daily insulin usage over the previous few months averaged 9 units of Lantus and between 23 and 24 units of Regular per day- a TDD of 32 to 33 units. On the pump my TDD has averaged 37 units. It feels like a lot.

My bgs on the pump have included  more numbers above 300 (seven days in the past month with highs above 300), and it's often been hard to get them to go down- the turnaround time on my highs feels like forever although actually it's not. I'm not sure if I've had more or fewer lows. It does seem like I've had fewer severe lows although I've had two really problematic ones (the kind where my thinking is drastically affected) and I'm wondering if that might be because of how much more sleep deprived I am. This thing goes off all night practically every night.

For a somewhat different topic: some thoughts on how the pump's design could be improved:
  • Offer more basal patterns, and let me name them! Not "pattern A" and "pattern B" but "chess day" and "AM work shift" and "saturday". Also, do NOT put a "special status" circle to signify I'm using anything other than the "main" basal pattern.
  • I really miss the Guardian features on this pump. WTF are you doing not letting me see any sensor data other than AUC and the last 24 hours' numbers?
  • Offer bolus patterns, to be optionally linked with basal patterns.
  • Let me customize my IOB features- let me program in what percentage of the insulin is used up in what amount of time. Because the available options just aren't my reality.
  • When I'm running a low basal rate, like 0.150 u/hr, I'm aware that means that I'm getting 0.025 units six times per hour. I'd like to know what six times, so that if I want to disconnect for five minutes, I can pick five minutes when it wouldn't be giving me any insulin anyways.
  • On the CGM, it would be nice to have two separate high threshholds. Alarm at me when I hit 160 and if I stay above 160 for three hours... but also alarm earlier if I hit 260 (for example).
  • Don't go to lost sensor in just 40 minutes please.
  • Make a stronger transmitter. It's pathetic to have it lose the signal just because I rolled half way over in my sleep.
  • Boluses often take a long time to deliver- if I want 8 units for breakfast, that takes two or three minutes. That's fine. What's not fine is that for that whole time, I'm locked out of changing my basals, changing anything in the sensor (like entering in a calibration, or telling it to find lost sensor, or changing glucose limits). Come on!
  • It is extremely not cool that a site that is marginally working does not trigger any alarms. I got ketones and lots of high blood sugar without any kind of alarm except for high alarms when I had a cannula folded in half. Apparently if a little insulin is making it through every now and then it doesn't trigger alarms as much. Not cool.
  • The buttons to turn on the backlight and to go to the Bolus Wizard only do those things from the home menu. If it's the middle of the night and I want my backlight, and I don't know what screen I'm on 'cause I can't see it, that is really really annoying. Give me a backlight button that works no matter what screen I'm on. 
  • If a bolus is in progress and I want to cancel it, I should not have to suspend the pump. There should be a menu on the bolus screen where I can arrow down and cancel bolus in progress.

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