LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014

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Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Tuesday, April 03, 2012

Lifeline from the helpline

It’s really not in my makeup, but sometimes you have to do it. Sometimes you… (((shudder)))… sometimes… sometimes you just have to ask other people for help.

You see, my inner-person is more oriented to being the helper not the helpee. Being the one who answers questions, not the one who asks them. Being the person flying the rescue helicopter, not the fool on his roof surrounded by water.

But by the thirteenth pump alarm, it was pretty clear I was the fool on the roof top—and the water was rising pretty quickly. Some were “no delivery” alarms, Med-T-speak for an occlusion of some sort. These are generally caused by kinked tubing or crooked infusion sets, the later almost always coming shortly after inserting a new set. But some of my “no delivery” alarms were hitting veteran sites that had been in place a full day or more.

I was also getting the more mysterious “motor error” alarms, defined by the Revel manual with the Cliff Notes-esque: Insulin delivery has stopped. This alarm occurs if you pump detects a motor error. Well, that’s fucking helpful. Presumably we’re talking about the motor that pushes the push-rod that drives the plunger that delivers the insulin. (Almost sounds like a nursery rhyme, doesn’t it?)

This kind of alarm is more like a mild heart attack than a massive stroke. The pump skips a beat and shuts down. But it’s not dead. It can be resuscitated.

At first, each time it happened, it was during some sort of bolus. Sometimes a meal, but usually a correction. Adding to the confusion, for me at least, is that the shut-downs happened mid-bolus and I was left unsure, even reviewing the various history and alarm menus, how much of the intended bolus I actually got or didn’t get.

As you can imagine, my blood sugar control has been less than stellar over the last 48 hours.

I’ve now gone through six infusion sets in two days, which sadly, means I’ll now run out of supplies before the end of my two-month trial of the system. The various blockages and motor issues have devoured eighteen days of supplies. Still, I wasn’t sure if I was just having a really bad fucking luck, or if my new pump was sick.

But when I got my first motor error in the middle of the day, a good 20 hours into an infusion set, I was pretty sure something was not right with the Revel.

It was time to call for help.

I dialed the toll-free number on the back of the pump (after spending half an hour trying to find a coin to unlock the stupid belt clip so I could take it off to read the toll-free number on the back of the pump). After navigating various automatic menus I got a real live person who refused to talk to me.

Acutally, that’s not quite accurate. It turns out I couldn’t talk to her. I kept trying to tell her what was going on and she kept saying: “Hello? Hello? Is anyone there? Can you hear me?”

And I kept saying: Yes, yes, I can hear you fine. Can you hear me?

And she’d say: “Hello? Hello? Is anyone there?”

Finally she hung up on me. Then I realized I had my hands-free headset muted.

Oops.

I called back, pressed 1, then pressed 6, and got a different real live person. This one could hear me now.

My second conversation with the helpline went well. My summary: they’re friendly and relaxed. A good combo as I’m sure most callers are freaking the fuck out by the time they phone home to Northridge about a pump problem. (I’m assuming all type 1s are as resistant to asking for help as I am—personally I think the genes for type 1 diabetes are also the same genes that influence stubbornness.)

I did get the feeling she was reading a bit overly much from a script, and the script was written for the lowest common dominator, in this case someone who knew absolutely nothing about their pump. Still, I didn’t really feel talked down to, and this is probably the best way to make sure people get the help they need from the helpline.

I told the lady on the other end of the line that I was having a shit-load of no delivery alarms and motor error alarms.

My rescuer told me that motor error alarms can be caused by a variety of things, can be difficult to diagnose, and in some cases are basically just an alternate occlusion alarm.

She asked me about site rotation. I’m a frickin’ merry-go-round when it comes to site rotation. She asked me if I might be placing the sets into scar tissue. No real way to know that unless you peel your skin off, of course, but it didn’t seem likely being adult dx’d. And even if I have some scar tissue, it seems unlikely I’d suddenly have it every fucking where I put in a set. One, sure, maybe. But six in a row?

Next, she asked me a check-list of infusion set questions.

I’m wearing the Quick-set Paradigms with the 6mm cannula, and have been for quite some time. Back in the day, when I started pumping on the CoZmo, I used the Unomedical Comfort angled sets. They worked fine for a couple of years, then I had a nasty period of under-insuredness when I couldn’t afford my pump supplies. Readers from around the country sent assorted left-overs to me so I could limp along. One box that showed up was, much to my surprise, Quick-sets with the luer lock.

Now, remember that Med-T uses a propriety connection between the tubing the reservoir so that you can’t use anyone else’s infusion sets on their pumps. They do however, like to have their cake and eat it, too; so even though no one else can make a set for a Med-T pump, they seem to have no guilt making their sets both with their own unique connector and with the luer lock that every other pump in the world uses. Well, you don’t become an 800-pound gorilla by being a friendly monkey, I guess.

Anyway, I really, really liked the Quick-set. I found it well designed, easy and quick to put in, I liked the self-storing sharp for the guide needle, and most importantly, I found that switching from the angled set to the straight-in type seemed to help my insulin response. My control improved.

When we got pump-friendly insurance at the clinic the next year, I switched to the Med-T luer lock sets with my CoZmo pump, and have used them for several years. At first I used the longer cannula, but switched to the shorter one about a year or so ago, as I had lost some weight, and every once and a while the insertion hurt like hell—a sign my cannula might be too long.

Now, bear in mind that I’m not the poster boy for lean. Or athletic. Yes, maybe I’m on the somewhat thinner side, not that my BMI would show it. I’ve shrunk to six feet tall (ain’t middle age grand?) and I weighed 190 pounds this morning. That puts me at a BMI of 25.8, technically overweight, although granted, at the bottom end of overweight. I’d need to shed 7 more pounds to be consider “normal weight,” much less skinny.

My point is, I think my infusion set is appropriate to my bod. Debbie can also certify that I do not have six-pack abs. Or even a three-pack. Or a two-pack. In point of fact, my tummy is nothing to be proud of.

But even if I was wearing the wrong set for my body type, it seems unlikely it would work fine until virtually the day I started using them with a different pump. Although I suppose it’s possible that the Med-T pump has more sensitive settings for detecting occlusions than the CoZmo. Or maybe the CoZmo had a more aggressive motor that could push insulin though mild occlusions while the Med-T Revel can’t. I don’t know.

After all our infusion set talk, she walked me through a series of pump tests. We filled a cartridge with air (another three days of review bites the dust) and did various tests. We ran self-tests from the utilities menu. She asked three times if I had dropped the pump.

No. I’ve only had it two weeks. I haven’t had time to drop it yet. Give me another two weeks and I can probably oblige you.

In the end, she could find nothing wrong with the pump and declared it fit for duty. Thanks for calling.

Oh. One last thing. Go to alarm history and read me the alarms.

Sure thing, today at 11:45 am, motor error. Yesterday at 9:05 am, no delivery; at 8:26 am, no delivery; at 8:06 am, no delivery. The day before, 7:04 pm, motor error; at 1:30 pm, motor error; at… What? You don’t want the rest of the list?

She’d heard enough. With that many motor errors so close together, the Official Policy is to replace the pump. Hmmmm…. Then why spend 30 minutes on the phone trouble-shooting the frickin’ pump in the first place? The first words from my mouth had been that I was having a shit-load of motor error and no delivery alarms.

(((Sigh)))

Next, she began the replacement process. As the pump is having trouble within thirty days, they’ll send a brand-spanking new one. If it had been 31 days old, they would’ve replaced it with a used re-certified unit. Given the prices of pumps, that seems a little skimpy to me. Of course, this one is just a loaner. I was actually surprised they loaned me a new one for my review in the first place. Still, had I bought this pump I would like to have thought that Med-T would replace it with a new one if a problem developed for at least 90-days. I think I’d be a little miffed if a new pump croaked early on and I could only get a used “re-certified” replacement for it.

Anyway, I had to promise to send the old one back within 14 days in the box that would be sent out with the new pump, or I’d be charged thirty-six hundred odd dollars. No doubt they’ll perform a postmortem on my sick one once it gets back home, to try and find out what went wrong. Then maybe it’ll be re-built, it’s memory of its time with me erased, and it’ll be sent to some poor sod who’s new pump craps out 31 days after he got it.

And if the new pump starts giving me the same alarms, I had to promise to call the helpline again and have them help me choose a better type of infusion set for my body type.

Next, we went through more common sense details. Record the settings on your current pump, etc., etc. Then she dropped the bomb on me.

“Don’t use the pump. Do you have a plan to get you through until the replacement arrives?” She asked.

Not a very good one, I admitted.

We’ve no basal insulin in the house, and I wouldn’t be able to remember how much I used to take if 20 guns were pointed at my head (although you could take your total daily dose of pump basal and increase it by 20% and be damn close to what you need.)

She wasn’t content to leave it at that. My mind was racing. If I pulled the plug on the ailing pump, I’d also have to pull the plug on my CGM, and on the Sentry as well. I could put a battery back in the CoZmo. Re-program it. Get out the Dexcom again. Put in a sensor for, what? Less than 24 hours?

Naturally, I lied to her and told her I’d put the old CoZmo back on. “Well, at least you won’t be without a pump until tomorrow,” she said cheerfully.

But I’d already decided to take my chances. If the pump totally kicked the bucket in the middle of the night, Sentry would wake me up. I could inject Novolog every three hours to keep alive until UPS arrived.

Not the best plan. But by far the simplest.


Next time: Waiting for the Brown Truck

1 Comments:

Blogger Scott E said...

That last piece of advice was certainly a CYA one. I just had Medtronic replace my pump because of a crack in the case. The rep advised me not to use it anymore because moisture could seep inside. I told her I had my previous one that I could use, but I pretty much ignored her advice. I just made sure my emergency Ziploc was fully stocked (with one infusion set, one reservoir, one syringe, one vial of insulin, expired ketone trips, and a AAA battery) and went about my day until I got my hands on the new pump. I can handle myself, thank you very much.

Oh, and she didn't ask for your last blood sugar reading? I find that Medtronic reps ALWAYS ask that... even if you're just calling to order supplies.

2:08 PM  

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