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Getting Used to My Pump

January 2, 2014

My pump and I got off to a rocky start. Part if it was my fault. We started our relationship at probably the worst time of the year, the week of Thanksgiving. Lots of parties, lots of carbs, lots of eating. It’s a period of overindulgence, and it doesn’t help a transition to a new device where knowing precisely how many carbs I’m eating is of vital importance. This isn’t something that I’ve always done, so I had a pretty steep learning curve.

Part of it was my pump’s manufacturer’s fault. (I’ve gone over this ad nauseum. Particularly here. And here.)

However, I feel like, with each day, I’m getting a little better at managing and controlling my diabetes with my pump. Here are some of my opinions about my new devices.

What I Love:
With the continuous glucose monitor (CGM), I’m able to see the highs and lows I’m experiencing in real time. Using the software that I’ve been provided (I upload data from my pump through my Bayer Contour meter, which I plug into my computer via the USB connector built into it) I’m able to analyze consistencies in sugar fluctuations. With this info I can adjust my basal rates and, as importantly, the carb ratios at different times a day.

This (the minute-to-minute control partnered with the CGM data is what I’ve been looking for. It’s what I’m going to use to maintain real control over my diabetes.

It’s taken a few weeks to figure out some of the patterns, and with the assistance of Judy, my wonderful pump trainer, I’ve started improving my control and limiting the peaks and valleys that are associated with diabetes care.

As an example, here’s a chart showing my CGM readings from Dec. 18:

Note the hills and valleys. Sugars going higher and higher through the night, so the next morning I woke up with a blood sugar in the high 200s. Not great.

Note the hills and valleys. Sugars going higher and higher through the night, so the next morning I woke up with a blood sugar in the high 200s. Not great.

Probably the most frustrating aspect of the post-8 p.m. sugar rise is that I could feel it happening. I tested my sugar a number of times, saw that my sugar was, in fact, rising, and tried to program correction boluses. My pump, however, had other plans, as it assumed my active insulin (really, a neat feature that prevents overdosing when the basal rate and carb ratio are correct) would take care of the high sugar.

It didn’t. I slept uncomfortably, had to get up and pee during the night, and probably was spilling ketones.

After making adjustments to my basal rate, carb ratios, and figuring out the best way to administer a temporary basal rate after dinner when I’ve had a meal that’s relatively high in fat, here’s a chart showing my CGM readings yesterday, Jan. 1:

Note the relatively stable line. The spike in midday is from lunch. The spike around 8 p.m. is from dinner. The green portion, which is nominally the target area for blood sugars, was not set by me. It ranges from 70-140. I don't think it's a problem to have a sugar in the 150s. No way to broaden the "Green Zone" though, to my knowledge.

Note the relatively stable line. Sugars rose a little while I slept, and the sensor detected a sugar around 180 when I woke up. My blood glucose reading was actually in the 150s. (You’ll notice the sharp dip around 7:45 a.m. That’s where the calibration takes effect. The chart is saying “Your sugar is 180. Your sugar is 180. Your sugar is 180. No it’s not! Your sugar is 155.) The spike around 8 p.m. is from dinner. The green portion, which is nominally the target area for blood sugars, was not set by me. It ranges from 70-140. I don’t think it’s a problem to have a sugar in the 150s. No way to broaden the “Green Zone” though, to my knowledge.

 

Needless to say, I expect the control to tighten more and more as I gain further experience with the equipment. I doubt I’ll realistically be able to maintain life in the “Green Zone,” but that’s their arbitrary area of goodness. I’ve been able to achieve really, really good A1C results without their little green happy space. I’ll keep working in a way that I feel comfortable.

What I Dislike Quite a Bit:
Sometimes the CGM isn’t really accurate. It’s not providing blood glucose measurements. What it provides are “sensor glucose values.” These are measurements of the interstitial fluids (read more here, for an opinion that is interesting but not necessarily completely endorsed) that can be 20% off, and can offer quite a few units of disparity. The CGM has to be calibrated pretty often (it calls for twice a day; I usually do it four times a day: at breakfast, lunch, dinner, and before bed). And even with that, sometimes it still lies. More on that later.

You can’t really control the alarms. The pump/CGM I have (the 530G with Enlite) has a feature called “THRESHOLD SUSPEND.” (I wrote that in ALL-CAPS because that’s the way it’s presented on the pump.) When this feature is turned on, and my sensor glucose level is detected to be below a set level (mine is at 60), an alarm goes off. The alarm (vibration, according to my settings) says “THRESHOLD SUSPEND,” and lets me know it thinks my sugar has gotten dangerously low. If I don’t turn the alarm off, another alarm (loud and audible) will sound and the pump will stop delivering insulin for a two-hour period. Also, a text message will appear on my pump that asks anyone passing by to get me help, as my blood sugar has gotten dangerously low, and that I may require medical assistance.

These things all, in theory, are good. However, when I started programming my pump, I selected the “vibrate” option for alerts and alarms. The THRESHOLD SUSPEND feature does not pay attention to that. It provides a claxon that is really annoying. And it keeps going off if it detects (correctly or incorrectly) that my sugar is still dancing close to that dangerous level. Again, this is good, theoretically. The problem occurs when the sensor isn’t reading my sugar correctly.

One night a short time after starting CGM usage, I went to bed. My sugar dropped a little overnight, and the pump started vibrating, waking me up from my sleep, telling me that THRESHOLD SUSPEND had started and that I should treat my hypoglycemia.

I did. I took three glucose tablets (usually plenty to right a low sugar). A short time later, the claxon started, waking both myself and Megan. I wasn’t pleased. (Neither was Meg.) I took more glucose tablets. A short time later, the alarm tripped again, saying my sugar was at 59. I took more glucose tablets. I checked the previous three hours (you can see the glucose patters over three-, six-, 12-, and 24-hour intervals) and it showed that my sugar had steadily remained at 59. I ate more glucose tablets. I fell asleep again, only to be awakened a short time later by — you guessed it — an alarm from my pump saying my sugar was at 59 and had triggered the THRESHOLD SUSPEND feature of my pump. I went downstairs and tested my blood sugar using my meter. It was at 204, after having eaten so many glucose tablets.

I was less than thrilled. I turned off all the alarms, the THRESHOLD SUSPEND feature, and everything else I could find and went back to bed. (I mentioned this to my sister at Christmas dinner. She’s an oncologist and pretty smart. She suggested taking the sensor out. I mentioned that each sensor is approximately $100, so I didn’t want to just throw the stupid thing away.)

I’ve since turned the THRESHOLD SUSPEND feature back on, and haven’t really encountered any difficulties with it, but I’m keeping my eye on this stupid thing. Since that night, however, I randomly get vibration alarms every hour, on the hour. Don’t know why, and can’t turn them off. I think it I want to set my alarms to vibrate, nothing should override them. I am the captain of my treatment ship, not this piece of machinery that’s attached to me. (My brother in law joked recently that I can now officially register as a cyborg.)

My Resolutions for 2014:
Drink less diet soda. I drink far too much, and it really isn’t good for you. There’s no nutritional value. I’ll just have to find a better way to deliver caffeine, as I don’t drink coffee.

Drink more water. See the item above.

More exercise! Meg and I have started talking about moving a little closer to my office, so as to cut down on my hour commute to and from work. One of the areas we’re targeting is the town that is home to the Brazilian jiu-jitsu school I used to attend. When we move (possibly as soon as the early spring), I’m going to get back to training, which will be great and will get me back to the best workouts I’ve ever taken part in. Between now and then, though. I plan on running after my 2-year-old son more, and doing something to start getting myself a little more fit and less fat. This will also help when I get back to training BJJ, as I won’t get my ass kicked quite so easily. (At least, that’s the theory.)

With regard to BJJ and my pump/CGM therapy, I’m looking forward to actually being able to view the way my fitness/training will impact my insulin consumption, and be able to change basal rate and carb ratios as needed. I plan on writing about this quite a bit, as there isn’t much on the web about diabetics who train in BJJ, and how the devices help/interfere with training.

Update on the Medtronic Fiascos: After my last post, I tweeted the CEO of Medtronic, as well as every other Twitter account associated with the company. I was then contacted by one of the company’s vice presidents who said she’s aware of my problems and is now my point person if anything else should go wrong. We had a nice five-minute conversation where she admitted that wrongs have been committed, that she’s personally working to make sure they aren’t repeated, and that the process is improved so these errors don’t occur for anyone else.

One of the things she said, almost immediately after we started talking, that I really appreciated was that she wasn’t going to apologize. She said she knows I’ve had numerous people apologize to me already, and that after a certain point it loses its meaning. This is something I really liked. I have a 2-year-old son, as I mentioned above. I’m in the process of teaching him what “I’m sorry” means. It doesn’t mean a get-out-of-jail card, where once you say those words, the world magically goes back to the place where you’re allowed to screw up the same way over and over and over again. I try to teach my son that “I’m sorry” means you’re going to try to change your behavior, so that you aren’t causing the same hurt over and over again.

I’m glad someone at Medtronic has that figured out.

I don’t really trust them yet; they have to earn that. Fortunately for Medtronic, Nancy took the right first steps.

If there’s anything you’d like to know about my experiences with my pump or CGM, or anything else for that matter, feel free to leave a comment below. I’d love to hear what you think and what you’d like to see me write about as I’m making this transition.

3 Comments leave one →
  1. January 3, 2014 10:00 am

    I like how you call the “zone” the “little green happy space.” Threshold Suspend is like a seat belt. It may feel restrictive or annoying, but for safety, it’s important to have it on for the (hopefully) very rare times when it is needed. And the only way to ensure that is to have a seat belt on at all times. Best wishes as you continue to use your new pump/CGM.

    • January 3, 2014 10:03 am

      Thanks, Kelly. Threshold Suspend was one of the big selling points for the pump. Hopeful I can get through the learning curve quickly. Thanks for the feedback.

  2. Ronald permalink
    May 6, 2014 11:41 am

    Brian, your comment about diabetes and BJJ is correct. I have been training BJJ and Muay Thai for the past 5 years or so, and although I almost have it down to a science (I am not on a pump; I use lantus for basil and Humalog for bolus), I still run into occasional lows. Its really hard to explain to the doctor how intense BJJ can be, especially on hot days in the gi, and how drastically it actually affects my sugar levels. I am in the process of switching to (hopefully) the Medtronic with the CGM. I am a little concerned with being able to roll with the CGM sensor in, as most insurance only covers a handful of these per month (my initial thought was I would just take the CGM out when I train, but that would require at least 3-5 sensors per week). Do you have any experience training with a pump? I am really excited as BJJ is a big part of my life and people do not realize how much fluctuating sugars can actually affect your cardio. There are days that I am exhausted before we are done warming up, and then other days that ill hit kickboxing class after BJJ and then go on to some hard sparring with our fight team. I would be really interested in exchanging information just to help eachother out. I was diagnosed with type 1 at the age of 12 and im 28 now; my A1C’s (except for a couple years late in college) has always been 7 or below; my understanding of how to take care of it via injections is very good, the pump seems to be a little different. Email me at bbuechel@sc.rr.com if you would like to connect.

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