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My Pump: What Works, and What Doesn’t

March 27, 2014

I’m now a little over four months into pump use and have seen what I believe to be a pretty good sample of the good and bad that comes with it. Some days have been great. Some, less so. Sometimes I feel like I have absolute control over everything that’s happening with my body, and that I’ve got this thing figured out, once and for all. Then reality (and my faulty pancreas) give me a well-deserved smack in the face to prove that I don’t know anything.

Since I made my switch, I’ve been trying to be aware of the things that work, and what doesn’t, when it comes to my pump and CGM. This list will probably be added to over time (similar to the occasional additions I’ve made to my “Stupid Things Stupid People Say, Stupidly, to Diabetics“), so be sure to check back.

What I Don’t Like: Learning to Count Carbs

This sucks. Seriously. For the majority of my 31 years as a person with diabetes (I still don’t like that phrase), I was able to wing it. I dosed based on my sugar, and how I felt my meal would impact my glucose. Counting carbs is different, and it sucks. My pump asks for specific numbers, and creates my dose based on that input. Oftentimes, it’s impossible to know how many carbs a particular meal has, so I’m left playing a guessing game again.

Just recently, I decided to go to a taqueria near my office for lunch. I spent more time trying to look up nutrition info about the restaurant (which is an independent establishment) and how many carbs my tacos would contain than I did going to the restaurant, ordering my tacos, and getting them to eat.

The upshot is that sometimes there’s no way to know exactly how many carbs are in a particular dish. Sometimes I’m still stuck playing it by ear and doing a rough estimate. The only way to know if I was accurate is to see how my glucose reacts after the meal: If it rises, I estimated too few carbs. If it crashes, I estimated too many carbs.

Like I said, I spent over 30 years doing things my way. I self-medicated and never relied on a doctor to set my doses. I was (and still am) vehemently independent in the way I care for myself. (Within reason, of course, as Meg is allowed input, but that’s only because she’s incredibly smart, and, after all, she is my wife. So there’s that.) Searching for carb info on labels and packages and on the internet is, I suppose, a small price to pay. It is, however, a drag.

What I Like: It’s Not That Cumbersome

Really, it’s just a small infusion set, a tube, and a pump that’s the size of a beeper (do something about this, Medtronic. Seriously. It’s 2014 already). The CGM is just a small sensor that has a little transmitter attached to it. It’s not difficult to sleep with this stuff attached, and I can keep all the tubing tucked in my shirt, and the pump in my jeans pocket.

What I Don’t Like: It’s More Cumbersome Than I Want It to Be

Please figure a way to incorporate the infusion set and sensor so I only have to do one insertion. There has to be a way. Also, beepers were more ubiquitous in the mid to late 1990s. Having a pump that looks like a beeper doesn’t make it blend in. It makes it look like I have been mistakenly cast in The Wire’s first season. It’s 2014. Do something to improve the aesthetics and the footprint of this device. Make it smaller. Combine the infusion set and CGM sensor. I’ll bet there are a few smart people out there who can do this.

What I Don’t Like: Ordering Supplies Sucks

There are two reasons why it sucks. First, and primarily, it’s expensive as f#*&. Even with a really good insurance plan, it’s incredibly expensive. If I had a different insurance provider, it would probably be cost prohibitive to be using a pump.

Secondly, the companies I can order supplies from (Medtronic and Liberty Medical) oftentimes don’t act as if they have my best interests at heart. (This is a good way to piss me off, as I’ve gone over here and here.) Medtronic, it seems, has excised my username from its records, so I’m no longer able to access their store via their website. I decided to try to re-up my supplies via Medtronic’s store on their webpage. It should be accessed via their customer-specific portion of the site (called “myHome”).

I clicked on the “myHome” link and was brought to a sign-in section, where I entered my typical username/password combo, only to get an error message saying there’s no record for me. There’s a link on the page that say “Forgot username?” and “Forgot password?” To make things easier, I thought I’d start from scratch and access my username. Then I could go through the process of resetting my password. I clicked the “Forgot username” link and was taken to a page where I had to fill out five fields: first name, last name, postal code, date of birth and email address. After filling all these fields out, I got a message saying “We’re sorry, the information you entered does not match our records.”

I called my good friends at Medtronic and was (after spending a really long time on hold and pushing buttons to get a human) told by the person who handled my call that the system sometimes purges customers after a short amount of account inactivity. (To me, that’s a really, really stupid thing to do.) She said I could just re-register, and that I’d then be able to order supplies. I thanked her and got off the phone, as I had to get back to work. I attempted to re-register, only to get the following error message: “We could not find your account in our system with the information you provided. For assistance call Customer Service.”

“F&#@ you, Medtronic!” I thought. I didn’t feel as if I had another half hour to spend waiting to get someone, and then have to re-explain the problems I’ve been having numerous times. DO BETTER, MEDTRONIC! YOU DO NOT IMPRESS ME!

(Update, April 7, 2013 Note: A member of Medtronic’s support team, Christina, emailed me to find out more details about my issues logging onto Medtronic’s site. I explained my predicament and she was able to fix the problem. She clarified that “The site was enhanced in February of 2013 and some accounts were loaded in to the new site duplicating enrollments,” and that my account appeared to be one of those affected. She refreshed the account, and all was well with the world. I thanked her profusely.)

That leaves me only one option for getting my sensors. (The other supplies can be ordered from any number of mail order companies. I, personally, would prefer to order everything all at once, so as to eliminate some of the hassle. Or so I thought.) I called Liberty and spoke with one of their customer service reps, who, after obviously reading from a script, which she stumbled over quite a bit, took my order delivery info.

Then she called me back to say she couldn’t get my insurance company’s pre-authorization, which is necessary for my sensors. I said “OK. How long does it typically take? Should I call them?” She said “No, we just wanted to keep you informed.”

Then a week passed, with no word and no delivery of supplies. I called Liberty again, and spoke with another customer service rep and was told my order hadn’t shipped, as I was still awaiting pre-authorization. The associate told me that this pre-authorization would make my process “quicker.” I questioned how this was so, as I had yet to receive my order, so it’s not necessarily quicker when I’m not receiving anything.

He told me my order would be placed on an expedited order, as I was running out of my sensors. I asked if I would be informed of if and when the order shipped. He said I would receive an automated call asking me to call back. I asked him if he was aware that it’s 2014. (This might not be fair, as he didn’t set up the stupid system that doesn’t sent an automated email when orders are placed or ship, but instead forces me to receive an automated call that’s always cut off when I hear messages and is oftentimes indecipherable.)

Another CSR at Liberty emailed me to say he’d be my point of contact and would inform me when things were happening. I thanked him, but said it would be better if they set up an automated system, as it’s 2014, and it’s an easy thing to do.

Then my package arrived, containing only my sensors. I had to contact my good friends at Liberty to tell them I hadn’t received my infusion sets or reservoirs, and that I was running out of them, too. He said my order was ready to go, and all I had to do was tell them I needed them and he’d ship them out priority mail. I was confused, as I thought my call to order them signified that I wanted to, in fact, order them, and that I did want them to be sent to me. That’s why I called in the first place.

I also used this as an opportunity to point out that if they had an automated system in place to inform customers when orders were placed, confirmed and shipped, I wouldn’t be wasting my time calling over and over, and waiting for supplies that May or may not have actually been ordered.

The remainder of my supplies arrived today, three weeks after I placed my initial order. It shouldn’t take this long. There’s no excuse for why it took this long.

What I Like: True, Tight Control Over My Sugars

This is really, really awesome, and will be what brings about lower A1c results as time goes on. It’s reassuring to be able to look at my pump and know (unless my sensor is lying to me, of course) what, approximately, my sugar is doing. It’s reassuring to know that, if I’m driving, my sugar won’t bottom out without me getting at least a warning that it’s happening. (At that point, I always have my stash of delicious glucose tablets to fight off a low.)

What I Dislike: Having to Memorize the Bolus Hacks

What is a bolus hack, you ask? It’s the pattern of increased, or decreased, bolus rates depending on what I’m eating. Having pizza for dinner? After determining how many carbs I’m having, I also have to program my bolus rate for 125 percent for six hours, to counteract the fat in the cheese. There are about a dozen of these hacks, depending on what the food (or alcohol) is, and they can be pretty taxing to remember at times.

Having said all this, I still feel lucky. That won’t stop me from complaining when I see something I really don’t like. (I’m looking at you, Medtronic and Liberty.)

(Note: I am not a doctor. Nothing I say should be considered to be medical advice. I only talk about what I think, and what I’ve done that works for me. There’s nothing in this blog that is a medical recommendation. Make your own choices. Talk to your doctor. Know that I am not your doctor.)

3 Comments leave one →
  1. March 28, 2014 10:52 am

    I’ve been pumping for quite awhile and echo many of your sentiments. At first I _hated_ counting carbs. When counting incorrectly, you end up on that roller-coaster ride of high/low blood sugar the remainder of the day.

    Given time, you’ll learn to “wing it” when counting carbs too. I swear there are things that I routinely eat that if I go by the carbs in the nutritional information, I’d wind up giving myself not enough or too much insulin. Whereas with some foods it’s spot-on.

    One thing I thought I’d point out is that the Bolus Wizard is giving you suggested values. If after punching in your Blood Sugar and Carb Count you think the bolus amount is correct/incorrect, you can use the up/down buttons to manually adjust the size of the bolus.

    I’d suggest that you be cautiously adventurous with your insulin pump. If you think that the Bolus Wizard isn’t giving you the right amount, then adjust it manually. If you find that you’re making manual adjustments in the same direction all the time, tweak the ratio in the direction you’re tweaking your boluses.

    (I’m not a doctor either, consult your doctor before doing anything)

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