Adventures with Comrade Dex

My name is Clemma and I am writing about my experience with the Dexcom Seven continuous glucose monitoring system. I live in Minneapolis with my young son and my not so young husband. I was diagnosed with Type 1 diabetes 11 years ago, when I was almost 21 years old. I started pumping 7 years ago, first with a Minimed 508, then an Animas IR1200, and now with the OmniPod. Friday, June 29 I hooked up to my newest constant companion, the one and only Comrade Dex...

Monday, November 9, 2009

November 2009? Where did the time go?

Two years pass in a flash. Or else they drag on endlessly. It depends on what I'm doing and how much I'm enjoying myself at the time.

I stopped posting to this blog because a) the original reason for writing was that I was one of the very first to try the Dexcom 7 and other people wanted to know about it but after a few weeks that need was less relevant, b) it takes a lot of time to keep up a blog and I am lazy, and c) I gave up on Dexcom because they kept dropping the ball with my insurance paperwork. In the last few months I've come back to Comrade Dex and I'm returning to the blog to help me keep track of events as I slog through the swamp of the insurance approval process.

Let's talk more about c, with the caveat that my memory might not be 100% accurate. At that time, a woman named Mildred (Mil) was their insurance person. She was supposed to submit my paperwork and haggle with the insurance after their expected denial of coverage. I gave her everything she said she needed and she promised to submit the paperwork that week. I waited, and waited, and waited. Finally, a couple months (!!!) later I contacted her to ask for a status report. When she finally got back to me, she said something opaque about the insurance company not having a record of submission. Hmmm. She said she would submit "again". I waited and waited and waited and finally started contacting her for another status update...and she never got back to me. After a series of emails and voice messages I just gave up. I know I could have tried talking to other people in the company, but I was working and pregnant and had a toddler and I just didn't have the energy. It's really too bad because it would have been awfully nice to have the 7 watching out for me while I was pregnant. So that was that for Dexcom trial #1.

Fast forward to Summer 2009. After being solidly in the 6's for half a decade, my A1c crept up above 7%. Go figure - turns out having two young children and working full time and oh yeah trying to keep the house from disappearing under a pile of toys and filth makes it hard for me to test my blood sugar as often as I should. Chronic sleep deprivation is so much fun. Especially at night, I could not rouse myself to check blood sugar and ended up running high for hours on a regular basis.

That >7 A1c startled me out of my rut. I enlisted my husband to take charge of forcing me up at night to check my sugar (thanks honey!) and I called my local Dexcom sales rep to restart the insurance process for the 7.

My sales rep is named Tim and he is awesome. He is On Top Of Things. He met with me right away, updated the software on my 7 receiver, retrained me for the system, and gave me a couple free sensors to tide me over while they submitted my insurance paperwork. Turns out Mil was no longer with the company and the new team would be great, and so on and so forth. I faxed them the forms and information they needed, then waited to hear.

And waited, and waited, and waited some more. Used up the sensors. Tim gave me more. Waited, waited, waited. Didn't bother asking for any more free sensors.

FINALLY I received a denial letter from my insurance company in the mail. That is a story in itself and I will continue the saga in a new post.

Monday, October 22, 2007

Stupid User Experience: Changing insulin pump site

Here is a tidbit of advice. When you are in a hurry to change your insulin pump setting, take the time to LOOK at it before you reach down and pull it out. Examine the site. Verify that there is a tube leading from the site you are about to rip out, and that this tube is attached to your insulin pump. If there is no tubing, and if there is a small black transmitter where no small black transmitter should be, this means you had better stop your hand before you make an expensive mistake. Yesterday I was in a rush, reached down and ripped out the site with nary a glance. You guessed it, it took my addled brain a few seconds to realize that I had just ripped out my Dexcom sensor, only on day 3 and until that moment functioning very well with excellent accuracy. "Ooops" does not describe the extent of my self-loathing for the next 30 minutes. I have one more sensor left and currently cannot afford to re-order. I haven't decided yet if I will put the new one in now, or wait the remaining 7-9 days I expected to get out of the poor sensor that died an untimely death.

Moral of this story: Look before you rip.

Friday, October 19, 2007

Houseguests and broken cables

Obviously I took some time off from posting here. We had unexpected houseguests - my sister's friend and her 18 month-old son. They stayed with us for 4 1/2 weeks of my life that I will never get back. Personal computing time was non-existent. I have to say, I used to think my child was loud, but after a month with Evil Houseguest Child, I know realize that Adrian's noise level is like a gentle lilting breeze. Lest I sound unduly harsh, let me add that Evil Houseguest Child bites people. His favorite victim is my 2 year-old son. Luckily the houseguests are gone now, Adrian's welts are fading to bruises, and I am starting to feel like my old self again.

I also took a Dexcom break. I had a couple bad sensors, and then my calibration cable broke. After they replaced the sensors and the cable I just didn't get around to starting again. I put in a new sensor at work this morning and realized I forgot the transmitter at home, but I'll be initializing it tonight. I was surprised to have two bad sensors in a row. I think my next post should be about when sensors fail. The Dexcom manual kind of glosses over that, if I remember correctly.

Tuesday, September 18, 2007

Adventures with LifeScan customer service

Disclaimer: I sat on this for a week without posting it because it's a long rant that I wrote when I was mad and I thought I might want to tone it down. Nope - I'm still mad, so here it is.

Last Sunday morning I wake up and try to do a finger stick test so I can calibrate the Dexcom. "ER 4". Ooops, maybe that's one of those not-enough-blood, or one of those you-idiot-wait-for-the-blood-drop-prompt messages. Try again. "ER 4". And again "ER 4". Screw it. Wait a couple more hours. Try again. "ER 4". Where the heck is my OneTouch Ultra manual? Can't find it. Oh, there's the OneTouch Ultra2 manual, the meter I really prefer but can't use because for some messed up reason they only synced the technology with the plain old Ultra. Still, the error messages are probably the same, right? Look up "ER 4". To summarize: 1) High glucose and a cold tester; 2) Test strip problem; 3) Sample was improperly applied; or 4) Meter problem. OK, I have been using OneTouch meters for 6 years, and I know how to properly insert the test strip and apply the sample. I suppose there is a slim chance it got cold, lying there under my pillow during the night, so I stick it in my pocket to warm it up. Try again "ER 4". Screw it and wait a few more hours. Realize I have to call Lifescan customer service because the thing is going to quit on me if I don't calibrate soon.

Now the fun really begins. I happen to know I initiated the call to Lifescan at approximately noon. They have an annoying voicemail maze before you are awarded the honor of being on hold for a customer service representative. I sat there on hold for quite a while, gosh, maybe 10 minutes. I got bored and started painting my living room while holding the phone to my ear (I really have to get a headset for times like this). About 30 minutes later I remarked to my sister that I thought this might be the longest on-hold experience of my life, but I was making good progress on the baseboard trim. Twenty minutes later, after one full hour on hold, I estimated that I had listened to their canned message telling me how much they appreciate my patience at least 20 times. Oh - and did I know they are on call for my needs 24 hours a day, 7 days a week? I know smart people have done research showing we customers prefer occasional recorded reminders that we haven't been cut off, but by this point the recorded voice only reminded me how completely my patience had gone away.

After 75 minutes my sister speculated that they don't actually have any customer service agents working on a Sunday, and they just use that recording hoping we'll get annoyed, hang up, and call back on a week day. I am nearly done with the living room trim by now, and I have a crick in my neck from holding the phone, and I am really, really, mad. BUT I stay on the phone because what else can I do? I have no other way to calibrate the meter, and the clock is ticking on my very expensive sensor!

As mad as I was, I tried to temper my rage when the hapless customer service representative finally did pick up the call after NINETY MINUTES on hold. I like to assume that this is not her preferred career, and have compassion that her idiot bosses didn't hire enough staff to, well, SERVE their CUSTOMERS. Actually, she had to wait for me for a couple minutes, because I had finally let my sister hold the phone while I used the facilities. Now, this was a nice woman. She went through the protocol and fairly quickly told me a replacement meter would arrive on Tuesday. Part of her protocol is she has to ask questions about whether the glitch in the product caused any actual medical calamity. Did I have to alter my medication because of the problem? Did I have any adverse reactions to too much or not enough medication because of the problem? Well, no, I guess not, I mean I still took my insulin and I didn't pass out or go into ketoacidosis, but where is the question about how much money it will cost me to go three days on this sensor with no way to calibrate the system? Since she didn't even know what the Dexcom CGMS was, I wasn't surprised she didn't ask about the financial ramifications of the meter failure.

Before I end this rant, let me just make sure you noted that last point. This CGMS system, which requires us to use a Lifescan OneTouch Ultra meter, is totally unknown to at least one of the customer service representatives who answer the phone if you have meter problems. Does that seem weird to anyone else? It seems weird to me, but maybe I'm still reeling from the paint fumes I inhaled while hyperventilating from on-hold rage.

The key takeaway here is: try to convince your Dexcom rep to send you two new OneTouch Ultra meters when you buy the system. This is the first time I had a OneTouch meter fail, but it cost me at least 3 days of my sensor, which was extremely vexing. Also, don't have the poor planning to EVER need Lifescan customer service on a weekend.

Wednesday, September 12, 2007

First post-Dexcom HbA1c

I saw my endocrinologist yesterday. Context: I was nervous because for the past 3 weeks I have had major struggles with my blood sugars. In addition to wacky insulin resistance, I am really hating the fact that I don't get repeated alerts if my sugars stay above the high threshold. The other night before I went to bed I was 158. I took a correction and went to sleep. I woke up 8 hours later and discovered I had spent most of the night hovering around 300. Since the correction bolus had not brought my sugars below the 140 threshold, I was not alerted when they continued to rise. I've had a few other nights with similar problems, but that was the worst.

I have also been on the fence about whether to continue using the Dexcom system. On the whole I like it, but honestly I'm not sure it's worth $240 each month. I know for some people it is working great and totally worth it, but for me I'm still undecided. I don't know what my standard deviations were before starting the Dexcom, so it's hard for me to tell if I'm reducing my overall variation.

Back to the endo visit: At the office I was expecting a high A1c. My last reading, about a month and a half before I started the CGM, was 6.4%. Imagine my shock when the A1c came back at 6.1%! I was so surprised I asked if their machine might have been wrong. The tech assured me it was accurate, so something is going right, the last three weeks notwithstanding.

Conclusion: I'll stick with it for now and see if I can go under 6.0 next time.

Thursday, September 6, 2007

Obtaining insurance approval

Today I finally started the process of getting my insurance to pay for this thing. My current insurance is a Uniform Preferred Provider plan, which I get through my job at the University of Washington. They have historically been great about approving requests quickly. Cross your fingers for me.

The Dexcom insurance submission goes as follows:
1) Contact the woman who is in charge of obtaining insurance coverage for Dexcom customers.
2) Fax this woman a copy of my insurance card; subscriber's name, employer, and date of birth; my relationship to the subscriber, and my name/employer/date of birth
3) That is as far as I have gotten. Presumably this nice woman at Dexcom will submit the request to my insurance, at which point they will cover it in full. Hey a girl can dream...

I'll update this post as soon as I have something to report.

If you are a CGMS user who has obtained insurance coverage, please comment to this post and share your story. Heck, even comment if you tried and were denied.

Thursday, August 30, 2007

Out of town for the weekend

I hoped to write another post today, but time is running out before I fly to Salt Lake City for the obligatory Labor Day weekend wedding. Here are some topics I'm planning:

* Exercise
* Accuracy - pictures of good accuracy, bad accuracy, and what it looks like after a corrective calibration
* Wearing the receiver, wearing tighter clothes over the transmitter
* Learning curve - little things new users have to figure out for themselves
* More wish-list items
* How to know when the sensor has failed

Any requests?