Today is my final “you just started wearing an insulin pump for the first time” class/appointment/whatever. Based on past experiences, taking anything the CDE at this education center has to say to heart will not be sufficient for my diabetes management needs. This person, while objectively qualified, has not instilled any confidence in their ability to assess my data, or make recommendations on improving my insulin pump settings. I’ve learned that hearing the phrase “maybe we’ll try this” one-two many times can have that effect on me. Am I being unreasonable? Between the two face-to-face appointments and the daily follow up calls after I started pumping insulin, I feel like I’ve given them enough of an opportunity to prove themselves.
After today, the plan of action is to monitor my data on my own, consult supplementary literature, and make incremental adjustments over the next weeks and months until my scheduled appointment with my proper-CDE. I know fine tuning the settings on my pump will take time, lucky for all of us, I’ve got plenty of that to give.
This morning my inbox was greeted with an email declaring Dexcom’s much-anticipated ‘Share’ received FDA approval and was ready for public consumption. Share is a cradle that houses the G4 receiver, transmits data via bluetooth to a paired device to the ominous cloud, where it can be accessed by up to five (5) people. I know what you’re thinking – you’re thinking that this is remarkably similar to that CGM in the Cloud/Nightscout thing I mentioned last week. And you’re right. The premise is the same: remote access to Dexcom’s continuous blood glucose monitor data. However, there are a number of caveats within the fine print of the Share that, to me, make it less appealing.
First, the price. $299. Cash. And because this is considered an ‘accessory’, this isn’t something insurance will cover. Next, platform accessibility. Share only works on iOS. Only on certain iPhones or iPod Touches after a certain model and OS version. Also, this thing isn’t mobile – at all. The cradle has to be plugged into an outlet to function, meaning this doesn’t help if I’m driving, on the bus, or anywhere not next to direct current.
But despite the limitations, I’m still thrilled to see this product on the market.
Last night I was chatting with someone after class at Stanford (excuse me while I pick that name up off the floor) about my perception of the FDA and realized we’ve come a long way. In particular, I recalled seeing Bennett Dunlap literally sitting at the table with the FDA, talking about the accuracy of our blood glucose meters. I can’t speak for other disease communities, but seeing one of “us” there with one of “them” is something I never would have anticipated five years ago.
An organization like the FDA has to move slow. The health of the country is in their hands. When it comes to reviews, recalls, reports, and other ‘r’ words, they have to take their time to ensure they’ve done their due diligence to get things right. That approach is what makes the conversation Bennett had all the more important. An entity as massive as the FDA doesn’t pivot in an instant. They don’t turn on a dime. Change is a slow, gradual process over there. That’s why it’s important for us to applaud, encourage, and continue to support efforts that recognize and include patient communities in their processes.
Every time they look to “us”, the patient community, we have to be ready to support the mere fact that they are including us in the conversation. Feedback on open dockets, like blood glucose meter accuracy offer an excellent opportunity to say “thank you for giving us an opportunity to share what we think, let’s do this again, as often as possible.”, or something like that.
My point is, when the FDA looks to the patient community for feedback, we have to speak up. We have to speak up not only for ourselves, our loved ones, and each other – we have to speak up for other disease communities who deserve a chance to be part of the discussion. We have to speak up to reinforce that this type of action is most welcome, and should be pursued as often as possible.
To that end, here’s your next opportunity to speak up. You can go to diatribe.org/survey and help inform the FDA on what matters most to you. Continue reading
I know, I’m burning this post title awfully early in the grand timeline of my wearing an insulin pump, but enough has happened already – in just 48 hours – that I’m going for it.
I’ve had an eventful start.
- My first night on a pump, we had pizza for dinner – like you do – celebrating my ability to program a legitimate extended bolus.
- Somewhere in the process of living my life, my infusion set went wonky.
- Despite the wonk, corrections had some effect. Which (incorrectly) led me to think my pump settings were off. Because I would know things were wrong after my first-ever 20-hours wearing this thing.
- After continued blood glucose tests, failed corrections, and general frustration, I did a full site change. Infusion set, insulin cartridge, everything.
- The next 12 hours involved staring at my iPad (monitoring my Nightscout site) as the number slowly fell back into range.
Today officially marks a new era in my diabetes management.
This should be…fun? Scary? Promising? Interesting? All of the above?
Before I explain my perspective on the CGM in the Cloud movement, the technology I’m utilizing to make this part of my diabetes management, and the resources I used to complete my implementation of said technology, I figured now would be a good time to put in a bit of a primer on Dexcom, the benefits I’ve found in wearing a continuous glucose monitor, and if you’re up for it, why this cloud business might be worth your time, energy, and money. If you want to skip to the CGM in the Cloud bit and ignore the tl;dr bits, this link will skip you a few paragraphs down. I’ll try to keep the run on sentences to a minimum.
Let’s begin. Continue reading
As teased earlier this week, I’m embarking on the process of taking my Dexcom Continuous Glucose Monitoring System to the Cloud. Assuming I get all this stuff working, I’ll share my specific steps and reasons next week. But, after my initial apprehensions with all of this Cloud stuff, and later messing around with the Chromadex App (and it’s most recent update to fully integrate with NightScout) for a few weeks, I knew it was only a matter of time before I took all of this to the next level.
Wish me luck!
Image (linked) via giphy.com