Monday, July 31, 2006

Oh, My Kingdom for a Peaceful Night

My best-est friend, The Dex, woke me up 3 (or 4?) times last night. As any new mother will tell you, the lack of uninterrupted sleep will fry your ability to create coherent thoughts or memories.

Anyways, Jack has his lower limit alarm set to 80. It buzzes me awake when it crosses that 80 mark, and I wake him up to drink something. We've recently figured out that one glass of milk will very nicely bring his BG up and keep him steady for hours while he sleeps. Last night, however, he either didn't feel like getting up or never really woke up. His BG hovered around 80 all night - which is great, but every time it crossed that limit on its way down, it would buzz. I tried to kick him out of bed to drink some milk so it would at least hover around 100, but he just checked The Dex, and turned around. And snored. The big lug...

Again, what's a little cross-eyed sleep-deprivation for my husband's healthy A1c?

Not Even Safe at Safeway

Sometimes I think Jack and I are both simpletons. Some things, very obvious things, completely pass us by, even though they're waving red flags in front of our noses. Such as...

We often walk to Safeway, our friendly overpriced neighborhood grocery store. It's a 10-minute walk at most, unless the Kooky Kid is accompanying us on his motorcycle (aka tricycle), in which case it's a 45-minute journey. Invariably, after about 30 minutes of shopping, Jack's BG takes a nose-dive. Usually as we're walking out the door on our way home. I always assumed it was due to the increased physical exercise, but was somewhat puzzled because walking to the same-distanced park did not produce this effect.

Lo and behold, an epiphany when the same thing happened yesterday: It's the temperature, dummies. Just as last week's record heats wreaked havoc on Jack's BG, so does Safeway's sub-zero ambient temperature. His BG also plunges after he's been swimming for 1/2 hour. It would seem that he needs more glucose to combat the effects of the cold and keep his body temperature up. Duh. So. Obvious.

The other thing I learned, in retrospect, is that we eat a lot of junk food! These post-Safeway BG emergencies were always saved by the loot we were carrying home. On different days: chips, cookies, chocolate milk. Yikes. Yesterday it was bananas - but only yesterday. Gotta get more control over the junk food!

Friday, July 21, 2006

Night Visitor

For the 2 of you who got to my blog not through DiabetesMine, I have another post there on a peculiar Night Visitor.

Thursday, July 20, 2006

Hooked On It

Well Jack's truly and verily hooked. He can't get enough of it and gets very, very nervous when it's gone. It's even warped his sense of reality and rational thought. Yep, he's addicted to The Dex Line. Yesterday it fritzed out on him again by showing him at 384 (yikes). He did a fingerstick to check and that came in at 38 (ouch). Well, The Dex was only off by one digit right? heh. And then came the shocker. He refused to drink any juice.
Me: Since when do you not drink juice when you're 38??
Jack: Since I have The Dex. And it says I'm high.

I've been (and am) a staunch proponent of this CGMS, but this is a negative I did not expect. Oh boy, they did warn us, those DexCom people, and the FDA, that you shouldn't base your treatment on its data. But it's hard not to do that - after all, why the hell get it if not to use its data to modify your treatment??!

Well, this is why. You get hooked, and it deceives you when you can least resist it, in the midst of a very low hypo. I finally convinced him that his meter really is more accurate than The Dex. The performance of this last sensor has been sporatic. Its data has been very far off fingerstick values a few times, and a couple of other times it's gone dead altogether. This latter situation is never pretty because then Jack gets very nervous: I don't know whether I'm going up or down! I don't know what my BG was 5 minutes ago, or now, or 5 minutes from now! I can imagine it's a bit like being blind (pre-Dex), getting full eyesight (during-Dex), then going blind again (no-Dex).

Both he and I have become very reliant on it, even with all its quirks. I check it during the night when I happen to be awake (and he asleep). We talk about the "night-line" every morning and cheer if it stayed within limit the whole night. He proudly shows me sustained flat lines like a little kid (Do you want to see my line? Do you? Do you?). I wonder if CGMS users show each other their lines when they get together (I'll show you mine if you show me yours.).

Anger vs Patience

I can be very angry at him when he goes low, as if it were his fault. But most commonly, anger within relationships is rarely about the specifics of the events, but reflective of some deeper problems. I notice that when I'm upset, I react angrily at his lows. When I'm calm and well-fed, I can patiently get him juice and repeat many times, You need to drink some juice. Yesterday I was tired from work and cooking dinner, and it was fricken' HOT people. So when he went low, and wouldn't drink the juice, and was telling me that the fingerstick numbers meant nothing, I lost it. I would have screamed if I weren't a repressed 'girls don't raise their voices' type of girl, but instead had to contend with dramatic eye-rolling, throwing a couple of fists in the air, and grrrrrowling in frustration. I walked away and really wanted to stay away, but I couldn't, could I? I had to stay and make sure he didn't slip into a coma, damn it. Maybe it was the growling, but he drank the juice after a few minutes. Afterwards, of course, I always feel guilty about my anger.

When our relationship was going through a bad patch (totally non-diabetes-related), I would become livid with his lows. There's a huge difference between an accusatory Are you low?!! and a gently inquiring Are you low?. Luckily for the both of us, nowadays I do the latter more than the former.

Tuesday, July 18, 2006

Ho Ho Ho

Exercise

Jack went to pick up Kooky Kid from pre-school last week. One of the classmates is a very cute, very chubby, pig-tailed little girl who looked up at Jack and said, "You have a big stomach!" Well Jack, being the type of guy who'll not let a 3-year-old get away with slighting him, poked her in her stomach and said, "Well you have a big stomach too!"

I totally cracked up when Jack told me the story because he said his feelings were "still hurt". I've been suggesting that he modify his diet or exercise more because he looks like he's 8-month pregnant. When I was pregnant, I would compare my increasing belly with his (at the time, he had a 6-month belly). Not subtle you say? Ya - subtlety does not count with him. Did this work? Naah.

But a little 3-year-old commenting, well that did (somewhat) work. He jumped on the treadmill for 30 minutes the very next day, and vowed to do so every day until the belly's gone. He "took a break" during the weekend, so we'll see whether the resolution will hold.

Diet

Jack loooves his fried/sated potatoes/meats and thick cream sauces. And his mega-size burrito. And his beer (especially his beer) and wine. Which would be ok if he exercised as much as he used to, but not at his present level of physical activity.

We used to live in The Netherlands where he commuted to work by bicycle because it was the norm, people! He ate more then, but was a slim, trim, muscle machine (I was certainly slimmer and trimmer too, but we won't dwell on that).

Lately he's argued that his diabetes is a cause of the belly: too much insulin=glucose correction. Too much glucose=belly. I say it's simply: more calories in than is being used up.

This is Life?

Jack and I have an ongoing debate about health and finances. He resists too many limitations on his diet or his spending because he says he may die tomorrow. So he should enjoy today. But, I argue, what if you live to be 100? Would you want to be decrepit and poor? Enjoy life today, but also remember that you're the caretaker of your future. Luckily, he more than knows this with regards to his diabetes.

Monday, July 17, 2006

The Temperamental Dex

Jack put in his 3rd sensor on Saturday. Two hours later he calibrated it (one finger stick from each hand), and started getting readings. But a short while later, he said that he felt low. The Dex showed 146. A finger stick showed 46 - ouch. The rest of the evening didn't fare much better, with huge discrepancies between The Dex and Jack's meter. We have a couple of hypotheses for this: (1) It takes a while after a new sensor is inserted for the readings to stabilize. Jack's heard that it sometimes takes a sensor a day to get the most accurate readings. (2) His BG was wildly fluctuating (most plummeting down) during the period after the calibration. But increased finger sticks & inputting that data into The Dex drastically improved readings.

By 11pm that evening, he wasn't getting any readings at all. Nada for 3 hours. So he restarted his session and the calibration process (yeah, it woke me up at 1am to demand those 2 finger sticks). Since then, it looks like it's been ok.

The Dex does lose contact every now and then, notably at night. Jack keeps the receiver on his night stand. Is is possible that when he lies on top of the transmitter the signal is lost? Supposedly the signal should easily traverse sheets/blankets/mattress. Ah well - this is still no worse than not having The Dex...

How The Dex Affects My Responsibilities

Last night I woke up to its vibration and nudged Jack so he could check it. He looked at it, then turned around and went back to sleep. So then I was left in the dark, wondering, "Did he consciously decide to ignore the alarm, or was he just groggy from sleep and just fall back asleep? Should I get up to check it myself and nag him to get juice/bolus, or assume he can take care of his own regulation?" Hmm - what a conundrum. Bad spouse that I am, I just turned around and went back to sleep.

This morning, he said he'd expressly ignored it because it showed 79, but the line was pretty steady. Then we looked at the data, and it showed a dip into the 50's, and a subsequent rise into the 80's. So it was ok this time, but he should probably have had a little juice.

Since The Dex, I've felt my responsibilities lighten a bit. Jack is *mostly* alarmed by it when he's **about** to go too low, so takes action then. As opposed to finding himself in a state where he is no longer able to make decisions. We've had many less situations when I'm nagging him to drink juice, although it does still happen. Sometimes his BG plunges so rapidly that The Dex isn't quite caught up yet (my hypothesis).

Money Money Money

Believe it or not, our monthly expenses have decreased since Jack's been on The Dex. He was able to use his first sensor for 6 days (the insertion site hurt by then) and his second for 10 days (probably could have gone longer, but the tape holding the sensor came off). Even if we had bought the system at full price, we would have recouped the money in about 4 months. So all in all, a savings!

The Dex (not including transmitter/receiver):

- $35/sensor, 1 sensor/8 days (average) = $131.25/30 days
- $0.90/strip, 2 strips/day = $54.00/30 days
- Total for 30 days: $185.25

Without The Dex:

- $0.90/strips,14 strips/day = $378/30 days
- Total for 30 days: $378

Thursday, July 13, 2006

What's My Line?

Here are the first charts from Jack's DexCom data (provided by the DexCom rep). Each of the dots is a measurement point:

One week's data:



My immediate reaction to this chart was, "Wow, his regulation is not at all bad!" With a few exceptions...There's the spike up to 350 on the last day which oh-so-pissed him off at the time. But in context of the whole week, he realized that it was just a blip. This chart also clearly shows him that he's too often in the low range (about 30% of the time), so he's recognized that he needs to take action a lot earlier to prevent those.

Seven days' data overlaid on top of each other:



This chart shows consistent highs around 4am, and lows around 8am, 1pm, and before dinner. He's tweaked his basal in response, and now is much better around 4am. We'll have to see about the rest of the day; it's very difficult to analyze without the PC software.


5-min interval data points are bad?
Yesterday Jack was low for 4 hours. Glass after glass of juice, and The Dex still deemed him low, at 60 + 10. We were starting to wonder whether he was the first Diabetic medical miracle (28-year Diabetic Produces Insulin Again!!). In this case, he was annoyed and angry at his body's weird reaction for 4 hours straight. If he had not been hooked up to The Dex, he probably would have been annoyed and angry 8 times in 4 hours. So which is worst?


Tuesday, July 11, 2006

To CGM: The Dex

Serendipity and nagging finally paid off! If only I were talking about the lottery, but alas... Still, it's close enough to winning the jackpot: Jack is hooked up to the DexCom CGM! I have to give kudos to the DexCom rep who jumped through hoops to make this happen in a timely and cost-effective manner.

For insightful and detailed experiences recounted from the user's view, read Amy's and Matt's blogs. My observations after 1.5 weeks of living the The Dex:

5-minute interval data is good:

- I have a much better idea of what Jack's BG is doing. Because: (1) he keeps gleefully telling me every ten minutes (ok, so this can get old), (2) I can check for myself if he's asleep, and (3) we see trends. This last point is crucial. Is it increasing? Is it decreasing? Now we know! As Amy wrote in this month's Diabetes Forecast, we're watching a movie instead of only looking at snapshots.

- And yes (contrary to official recommendations), Jack's based his treatment on its data, and prevented countless highs and lows by:
* Reacting to The Dex's alarm when he exceeds his limits (80-160)
* Doing analysis of long-term trends (e.g. because he was consistently high at 4am and low at 8am/1pm/5pm, he's changed his basal insulin delivery around those times to great results)
* Monitoring in real time the effects of sleep, insulin, food, and time of day. It's much easier to adjust the regimen on-the-fly.

- It's easier to put things into perspective. Before The Dex, Jack became livid when his BG went far out of range (e.g. 350). But then we looked at this whole week's worth of data, and it only happened once. It absolutely helps to keep those spikes in perspective.

- Jack says he "loves it". I think he feels he has much better control, and that he isn't dealing with his diabetes with a blindfold on anymore.

- It's pretty fun to look at that line, especially when it's flat-lined around 100 for the past three hours!

5-minute interval data is bad:

- We've had a couple of bad nights when The Dex has vibrated and yelped several times during the night. Well I guess that's good because it helps with the BG treatment, but bad because I get no sleep (couple that with baby & toddler interruptions, and I'm looking at 1-hour sleep intervals). Also, Jack's such a heavy sleeper that The Dex wakes me up, and then I have to wake him up. Nevertheless, I'll take a few sleepless nights over BG readings of 230 or 39.

- Jack can get rather obsessive about the readings. Yesterday he was in the 50's before, during, and for 2 hours after dinner. For some reason, being able to see the unusual trend real-time really worried him. But I calmed him and it all resolved itself nicely (again, thanks to being able to see the trends).

- It's not going to keep the BG within range all the time. Because shit will happen. The BG will plummet and shoot up, despite the alarms, trending lines, and analyses. All we can hope is that it'll happen less often.

Could be improved:

- We have noted, as have others, some inaccuracies in the readings. But we've been lucky, I guess, because the differences in The Dex's readings and Jack's meter haven't been more than 20 points off. e.g. Yesterday The Dex's reading was 49, and his meter came in at 67. Is 20 points a lot? IMO, it's acceptable because it's coupled with the trending data.

- We're still waiting for the software to be approved by the FDA (although the Dexcom rep and Jack's endo have it).

- Data display on the receiver could have been better designed.

- The transmitter is not waterproof! They've got "shower patches", but it still makes me nervous. We went swimming last weekend, and I swear that I saw some water in the patch, but Jack says it was ok.

Finally...
Lastly, I can't prove this of course, but I firmly believe that Jack's had fewer extreme lows and highs, and less fluctuation from the norm. Yesterday, I sent Jack and the baby out for a walk, without my internal alarms going off. How about that?! And low and behold, Jack even grabbed an emergency source of glucose before he set off. Is it my imagination, or has he become more responsive & responsible over the past week?