March 2, 2013
Quarterly Report Card
Even though I’ve been told not to view it as a report card, I can’t help but view our quarterly Hemoglobin A1C results as MY report card. How good of a pancreas am I? I can’t help it. And, I was a straight-A student, so making non-A’s or a non-passing grade is NOT an option for me.
Background: For those of you who don’t know, the Hemoglobin A1C is an “average” of what one’s blood sugar has been over the past three months. A normal non-diabetic person ranges from 4-6 (Don’t ask me the unit of measurement. I don’t remember. I think Mg/dL, but don’t quote me…it’s not important and I digress). For a growing Type One Diabetic Child, the Endocrinologist likes the A1C to be in the 6-8 range. Due to the volatility of this stupid disease and the timing and actions of insulin and food, keeping it “normal” like a non-diabetic is virtually impossible. So, we shoot for good enough.
When Aiden was diagnosed, his A1C was 11.2 which was an average sugar of something like 274! Yikes! First quarter, down to 8.2. Next quarter, down to 7.2. Success! I was so proud!
When Asa was diagnosed, his A1C was 8.2. We caught him so much earlier, and he was so much less sick. First quarter, down to 7.0. Score! Danged near perfect! Proud again! I call those A’s on the report card!
Here’s the kicker. Since the “automatic” engine died, learning to be a pancreas is like driving a manual transmission vehicle. Sometimes I give it too much gas. Sometimes I give it too much clutch. Sometimes we stall out. Sometimes my hand slips off the gear shift. Sometimes there’s no rhyme or reason for any of it. There’s an art, science, and witchcraft to get it all in sync.
In the hospital, we were started on the OneTouch Blood Glucose Meter. We liked it; we were used to it. Consumer Reports rank it the best meter on the market due to its reliability of results, ease of use, transportability, etc. Frankly, however, meters are a personal preference. None are perfect, and each patient has to decide what is best for them.
We were given a free “Latest and Greatest” One Touch Meter (Verio IQ), and as any good nerd would do, before I committed to this meter (last summer), I did a parallel study. I put blood on each meter, at the same time, in all situations. Well, this “gem” sucked! It consistently measured Aiden higher than the OneTouch Ultra. When he felt low, it would give a “normal” reading. That was enough for me to give it away and stick with the OneTouch Ultra.
In September, we switched to insulin pump therapy using the Omnipod system. Built into the Omnipod system is a FreeStyle meter. Staying true to my nerd form, I parallel studied the FreeStyle against the OneTouch Ultra. The FreeStyle consistently measured LOWER than the OneTouch. So, due to the convenience of using the entire system together, we opted to switch to FreeStyle.
Aiden’s first A1C AFTER starting on FreeStyle/Omnipod was UP 0.5 points to 7.8. I thought he was doing well. I thought I was doing well. This was a failing grade on my report card, a big fat C- in my book, and I busted out crying. Despite the CDE and Endocrinologist’s reassurances that “Aiden’s growing”, “He’s exiting the honeymoon phase”, and “You’re doing a good job”, I still felt like a failure and cried right there. I kept insisting “It can be the same or go down. It’s NOT supposed to go UP!” I just felt like all my testing, trials, getting up and staying up at night was misguided and a moot point. WHY? Just for the number to worsen?!
Yet, like a boxer who gets up to take another punch, I got up. I’ve been taking the punches. Day after day, night after night. Anything to make sure my babies are healthy. Anything to manually shift their transmissions. It’s no easy job being a pancreas…times two.
Three months pass, and it’s time to draw A1Cs again. I took out all my records and averaged both boys’ blood sugars so I had a reasonable guess as to what their A1Cs would be. I figured with a little “warning” and a level of expectation, I wouldn’t cry like a blubbering baby right there in the office (and thereby make everyone uncomfortable…including my innocent children). Simultaneously, when picking up a supply of strips, I got a notification from the pharmacy that the insurance company wants us to switch to OneTouch Ultra and will no longer cover the FreeStyle strips.
Initially, I was pissed. Don’t tell ME what to do?! I’m doing my best here! Then, at the gym where I do lots of thinking, I started thinking about the OneTouch vs. the FreeStyle. I remembered my parallel study. And, I talked to my husband about it. Maybe it wouldn’t be so bad to use the OneTouch after all. A little less convenient, but not bad.
Going to the Endocrinologist confirmed my decision. BOTH A1Cs were UP again! (8.1 and 7.8…bad) SHIT! (Good news, I didn’t cry. Terribly disappointed with the D- on the report card, but I held it together!) What it boils down to is their A1Cs are reflective of what their sugars would’ve been on the OneTouch. The FreeStyle is reading too low, thus there are times when their sugars are actually higher than what the meter reads, and, they aren’t getting enough insulin. Granted, I recognize there are SO many other factors that also impact these reports, but right now, this is the dependent variable in my study. (Growth, hormones, timing of insulin, amount of food, type of food, alignment of the stars and moon, brand of underwear they wear, exiting the honeymoon phase…and my favorite…his pancreas is completing its death.-- Nobody wants to hear anything is dying or dead on their baby…except maybe hair cells).
I made the decision to switch back to OneTouch. I changed the prescription. I reorganized. I explained to the boys. I got a refund on unopened FreeStyle strips and got a new supply of OneTouch. And….instead of $96, this supply only cost $25. Score! Another bonus!
Of course, I’m running another parallel study of FreeStyle vs. OneTouch with the remaining strips we have because that's the kind of dork I am. I’m getting the same results. FreeStyle is anywhere from 10 to 40 points lower. It makes me sick to think I’ve been working so hard, but my efforts have been thwarted by inaccurate results. I’m taking more punches and a couple of kicks, too. I’ll take the pain and inconvenience to get the best results for my boys. I’ll repeat testing, adjust rates, and hold my breath.
Only time will tell. We’ll see how this quarter goes. I’m hoping for and expecting IMPROVED A1C results. Hold your breath….