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Need vs. Want.

When I was planning my pregnancy, I wanted a Dexcom because I desperately wanted to bring down my A1C without crashing and burning into a pile of low blood sugars.  But when I was pregnant and dealing with the epic lows of my first trimester (hello, 29 mg/dl without symptoms), I needed my CGM.

Sometimes the Dexcom is not on-target.  If I am hyper-calibrating and feeding it too much information, I run into false-highs when I exercise and numbers that range a little more elevated than they actually are.  (That's running on the assumption that my meter is accurate all the time, which I know it's not.  And I take serious issue with that, but that topic is for another blog post.  A really long blog post with expletives, I think.)  Other times, the Dex is off for no reason at all.  But the number of ??? I see on my receiver are (thankfully) very, very rare, and I also don't experience a lot of sensor errors.  

When it's wrong, I get all huffy and pissed and I rant to my social media friends (aka the poor souls who are forced to Tweet alongside me), but it's always easier to complain about the bad stuff.  Who spends time talking about how wonderful their technology other is?  Nah, much easier to just gripe when they're being doofuses.  (Spellcheck doesn't like that word.  Doofusi? Doofusees?)   

But the other day, our stereo system went off at 5 am for absolutely no reason, pumping the sound of Aqualung into every speaker in the house.  Thus waking me up.  And Chris.  And the baby.  (Remember - this is at 5 am.  Fun!)  And of course BSparl wanted to stay up and play once she saw her mommy stumbling in with crazy bedhead.  So when her nap time rolled around, I decided to take one, too.  Chris was out working, so the house was peaceful and quiet.

And it wasn't until I woke up, groggily, to the sound of Birdy calling for "Mama!!!" into the baby monitor that I realized I was low.  But I didn't feel super low, just sort of crabby.  I figured I was in the 60's, but a quick finger prick proved me very wrong.  Meter showed 37 mg/dl.  I grabbed a fistful of glucose tabs from the jar on the bedside table and chomped them down, thinking absently about needing to weed the garden and thankful that the baby was playing instead of crying. 

Oh, and where the eff were my low blood sugar symptoms??

The Dexcom receiver and transmitter were sitting on my bathroom counter, waiting patiently for me to put a new sensor in, since the old one had peeled off that morning.

It would have woken me up when I was 60 mg/dl, instead of me waiting for the 30's.  It would have alerted me well in advance.  When it shows me double-arrows pointing up after what I thought was a reasonably low-carb snack and lets me catch a high-in-training, I am thankful for the Dexcom.  And when it beeps in the middle of the night to let me know I'm out of range, gives me the opportunity to correct it, and allows me to sleep in blissful blood sugar HappyZone, I am thankful. 

When I spoke with the Joslin medalists, they all mentioned hypoglycemic events.  And how scary they were.  They feared the lows more than the highs, because of the immediacy.  You can live for years with highs, but you can be stolen instantly by a low.  A few of the medalists were wearing CGMs.  And they all mentioned how amazing the technology, regardless of the brand, has become.

I thought about the 37 mg/dl I had while I was asleep.  

And in those moments, I realize I need my CGM. 

I love this picture. I want to tattoo it on my pancreas.

[Dexcom disclosure]

Comments

I truly believe CGM is a need for every insulin dependent diabetic. IMHO

Great post.

Great post Kerri!
I couldn't agree with you more. I got a new pump last year and got the integrated CGM this January. I wanted it to bring my awful a1c down to under 7. When I started taking care of my mom, I realized I needed it. Last month she was in the hospital for a few days and I had a few lows and I wonder what I would have done without it. I was busy taking care of her in the hospital and I really needed the warning that the CGM provides. I told my endo this and he agreed, he has many patients who work in the hospital that really "need" the CGM. I also don't always have as many symptoms with my lows, not nearly as many symptoms as I did pre-CGM.

CGMs are amazing! I've been wearing one non-stop for almost two years now and I don't know what I'd do without it. Even though it's not perfect, it is so much better than having hours between BG readings.

I agree with SuperG, CGMs for all T1Ds! :)

Kerri,as I read this blog, I was thinking about French type 1... without Dexcom. I really think that it's very important for us to have an alert when it's not too late, when you have time to correct. 4 months ago I asked an Endo (in a conference about new things for people with diabetes) and I spoke about Dexcom... "Yes, there are CGM but just when you start the pump, for 8 days"... that was the answer.
Somewhere over the rainbow there's a land...
Did you know the glucometer called BG Star from Sanofi-Aventis? I got one and I think it's a good one.
thank you so much for what you write. I'm always waiting for the next blog from you!

CGMs and pumps are like [electronic] hero; they save our lives on a daily basis. Just like I can't imagine life without my hubby, I can no longer imagine life with D without my Revel pump/CGM team. And just like my loved ones, Revel has quirks, idiosyncrasies, and annoying traits, but it's totally worth putting up with those things to have them in my life... The benefits far outweigh everything else! :-)

So totally agree. That mentality is what prompted me to live so long "out of control," hitting Scary High A1cs because the uncertain future complications were worth the risk while going Low and not waking up or losing my ability to function was not. Glad the CGMs offer a sense of stability so we can balance things out.

Unfortunately, accuracy issues aside, many people with diabetes (myself included) cannot get CGM systems covered even in spite of having hypoglycemia unawareness. The logic being applied by insurance companies is that they are not reliable enough, but they will happily pay for ambulances and ER visits for hypos that cost twice as much in a single visit as the CGM costs. I do not see the insurance company logic at all.

Well... you know we love our Dexcom. It saved Sweetpea's life not too long ago. It's a NEED for us. Not just a WANT. I can sing the praises of the Dexcom for days. And I have! LOVE IT!

May I never have to give up my CGM I would not know about those awful lows at night. I have had one too many of those when I did not have a CGM..don't want to ever go back to that

I started wearing a CGM in 2005 (in the FDA approval study), paying out of pocket for years until my insurance would cover it.

Aside from a few days here and there when insurance and/or delivery hiccuped, I've worn one 24x7x365 ever since. I do not feel any symptoms unless below 40 or above 400 and almost never see a nice flat picture like yours :) I think if it weren't for the CGM I wouldn't be here - it has stopped way too many sudden overnight BG nose dives...

I second George, ANY diabetic who wants one should have access to it. Period.

I love my dexcom. I need my dexcom. I have had 3 episodes prior to my dexcom where I didn't wake up for a low and had a seizure. My sensor died almost a week ago and I've haven't put a new one back on...busy busy. Thanks for your post, it was reminder I needed to put a new one on. Oh, and I think our babies have low radar, Patrick has woken up twice during the night (which he never does) and each time I woke up to a VERY low BG. Thank goodness he started crying! Great Post!

We are in the process of pursuing a CGM for Bean...will be talking with our NP on Monday, actually. And after last night (steady in the mid 100s at 2 two hour checks with lowered basal, then I let her go three hours and she's at 301...obviously missed something there!!) we are seeing the need for her to have one to help catch those crazy swings and help cut down of some of the 'extra' testing that has us in the close to 15 a day range of late!

I have mixed feelings about CGMs. I had a Dexcom and the accuracy was just never there for me. I currently use a Revel and I tried Minimed's CGM, but realized I was running out of real estate on my body. And I hated having to change TWO things (infusion set and sensor). And between the infusion sets and sensors, I was bruising EVERYWHERE. So I am back to using just my pump and meter.

I love the IDEA behind a CGM. But the logistical and accuracy issues I had with both CGMs was just too much for me to deal with. Not to mention the added cost (even with insurance).

I would LOVE to see this technology improve to the point where it is far more accurate and easy to use. And I'm talking accurate in a way that doesn't require me to also carry around my meter, which has accuracy issues of its own.

As for insurance coverage of CGMs - yes, it is still a fight to get a CGM even if you have insurance. But glucose meters were also a fight once and you can now get one OTC at any drug store. Yes, the strips are still prohibitively expensive, but those too have come down in cost. I would like to see the same trend for CGMs.

I know it's easy to hate on technology, but it is still an amazing tool. I too just hate when it doesn't play nice :( And where did that pick of the dexcom come from? I would be shocked if it came from a person with diabetes. LOL

This post scares the shizz out of me.

Is ten too young for a CGM?

Look at how perfect that 12 hour graph is!

I'm waiting on insurance to accept the fact that I'm diabetic, because right now They are refusing to pay for anything diabetes related (all of a sudden after a YEAR of payments). Those poops.

"You can live for years with highs, but you can be stolen instantly by a low." That line gave me goosebumps & will probably haunt me for a while. And I'm totally stealing it because I have trouble explaining why my lows make me so much more nervous than my highs.

And I'm really glad you're okay. :)

Ugh. This post reminds me how I commented awhile back about how awesome my insurance was that they were covering my CGM almost no questions asked. Well, we changed insurance and these idiots have only 2 justifications for CGM: I have to be pregnant (with poor control! Like that's desirable) or I have to have frequent lows below 50 (Wtf).
Having lived happily with Dexcom for 2 years now, I now find myself struggling with the need vs. want issue. I feel like I NEED it because I have lowered my A1c to 6.5% but damn if those idiots don't care about that. Like it has been said above, they would rather pay for ED visits and future complications than give us the tools we need.
Right now I'm fighting with Dexcom to appeal and paying out of pocket. I really don't like this side of the situation!

This is why I want a Dexcom SOOO badly! I've had a couple of middle of the night lows, and the fact that I wake up with a migraine means that my body actually brought me up to the low seventies, but I was probably in the sixties or even fifties before that.

I usually catch my lows in the sixties or seventies, but because I can't feel them, I have to rely on testing constantly, which is bad because technically I'm only supposed to test 4 times per day (I'll be talking to my endocrinologist about that in a week when I see him). I can't help it-I'm scared!

And I, too, HATE the "accuracy" of the meters. I once e-mailed Lifescan (from OneTouch) about the accuracy, and they told me that every finger has a different glucose concentration. What does that even MEAN??? PLUS their meter is only a rough estimate. There's a very big difference to me between 80 and 64, but to them, not so much. Um, hi, one is LOW, like the kind of low I treat with 15 grams of sugar stuffed in my face, and the other is "okay, let's have a snack". That's a pretty big difference.

I WANT A DEXCOM!!!

As I was reading this...Dexter is doinking off demanding the dual start up BGs. You are so right. AND...the "stolen in an instant by a low" gave me the chills.

First of all, high-in-training = perfect term for the double up arrows!

Also, glad to know I'm not the only one that gets the phantom exercise highs if I hyper-calibrate. At least the technology is consistent?

One of the other things that I hope comes out of CGM sooner or later is a better understanding of appropriate measures of glycemic control. Is A1C really the best? How does it correlate with standard deviation and/or area under the curve (AUC) of CGM data? One of the interesting things I found after perusing some of the literature on Symlin was that it struggled a bit for FDA approval because there *wasn't* a (statistically) significant drop in A1C compared to the placebo group but there *was* a significant drop in postprandial AUC because of the flatter line that Symlin helps you achieve, and that's what eventually got them the approval.

Like MBP, I have very mixed feelings about CGM. The accuracy just isn't good enough for me, and I hated having 2 devices, and I found it a little uncomfortable by day 6-7. I wish I could leave the transmitter attached all the time and use the sensor when I need it, but Dex likes a steady stream of info.

Kerri, I'm interested to know where you put your pump and Dex when you're running around the house, picking up baby, going to exercise. Do you ever feel tethered, or does the benefit outweigh the annoyance?

Is feeling like the biggest idiot tonight. I had an interview for a position that I desperately want today. In my last interview, my CGM kept going off b/c I had just finished breakfast and my blood sugar decided that would be the day to spike. I turned off the machine b/c I had just finished lunch (12:30 interview - made sure I had the same lunch that I had eaten for the last 3 days so I knew exactly what it would do to my numbers). I started the interview with a blood sugar of 120. Left the interview not feeling quite right... tested 90 when I got to the car... where I picked up the phone to call my mother & tell her how it went. She told me that I was slurring my words and I should make sure I blood tested - to which I replied that I had just done so and was 90. She told me to reblood test. (Everyone reading this knows where this is going...) I rebloodtested... 37!!! Seriously, huh?!? I chomped down on some glucose tabs... waited til I was up over 100... drove to the nearest fast-food place where I proceeded to down a hamburger, fries, & a birch beer! Made it back to work in one piece (where I talked to the director of HR as what to do) and proceeded to empty boxes & run up and down stairs for the rest of the afternoon with numbers in the lower 100s. Drat all of that planning! Anyway, the principal & assistant principal were awesome. They are re-interviewing me Monday afternoon.

Don't you just love the accuracy on the blood sugar meters? I once woke up with a meter reading of 62. I freaked out, because I felt absolutely fine. Re-tested, 81, then 82, then 83. I wanted four test strips because of the stupid first reading! But that 37? Waaay scary! It's a good thing you spoke with your mother before driving!

Dexcom,Bs meter, Medtronic pump,& all the other things needed for the daily run-around. It just seem like alot to have to worry about, I know/ understand why the Dexcom is an important device but not sure if i'm ready to be attached to another device.... my endo think's i'm a good canidate for the dexcom system. Just not sure if i should maybe look into the revel CGM or just have two extra things or just on with me at all times ????

Kerri I was wondering what pump u have and what CGM device you use, along with any thoughts, pros & cons???

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