Sometimes, life feels like a constant rodeo that you have been touring with for years. Even when you get thrown from the bull or you are anticipating the biggest ride of your life, it doesn’t always register as a blip on your radar. I spoke with G this week for a long time about the usual stuff; the blog, the kids, schedules. Quite some time in, I started digging through my Rolodex of life to see what else was going on that I could share:
Lowi: “Oh, yeah I just ordered Alex the newest insulin pump, which is the gateway to the artificial pancreas (AP). This is the first closed loop system they have been talking about since she was diagnosed almost 12 years ago.”
I know I just lost you with “artificial pancreas and closed loop system”, but bear with me, I will try to educate you.
G: “Way to bury the lead. That is big news. Why didn’t you start with that?”
The truth is we have been talking about it for months. Medtronic, who makes the insulin pump that both of my girls use, received FDA approval back in September and Alex’s doctor has been discussing it with us since then. In January, while at Reese’s endocrinology appointment our doctor started discussing the system with us at length. He didn’t feel Reese was ready for this particular system yet, but thought Alex was the perfect candidate. Alex already uses Medtronic’s continuous glucose monitoring (CGM) system, which allows her to better track her blood sugars and make adjustments prior to going too low or high. It has significantly improved her A1C and her life as she is not at the mercy of low blood sugars nearly as often as before.
What exactly is a CGM?
Continuous glucose monitoring (CGM) systems use a tiny sensor inserted under the skin to check glucose levels in tissue fluid. The sensor stays in place for several days to a week and then must be replaced. A transmitter sends information about glucose levels via radio waves from the sensor to a pager-like wireless monitor. (National Institute of Health)
What is a closed loop system?
Based on the CGM reading every five minutes, the pump’s software automatically increases/decreases insulin delivery to target a blood glucose of 120 mg/dl. The algorithm is fully integrated within the pump itself, so a patient only needs to wear the CGM sensor and the pump – no need to carry a separate CGM receiver. This new technology is considered a “hybrid-closed loop” because the user still needs to bolus for meals and notify the system of exercise. Otherwise, it mostly takes care of insulin dosing in the background. (Diatribe.org)
It’s an easy decision and a tough one. We have embraced the technological advancements regarding Type 1 Diabetes since Alex’s diagnosis 12 years ago and Reese’s diagnosis 4 years ago. This new pump and CGM system will automatically adjust Alex’s basal insulin delivery based on the readings. Currently, we set the basal rates according to their needs during each hour, which can change anywhere from every few days to weeks depending on the need and activity level. We base this on their blood sugar readings from their glucose meters, not a CGM.
For example, if Reese wakes up with a blood sugar of 250 every morning, we know that she needs more insulin prior to waking up in order to bring those numbers back into normal range (80-120). This trial and error method can take days to get right and by then her needs also could have changed because she is a teenage girl! With this new system, the pump will adjust and give the appropriate dose of insulin when needed based on the continuous glucose system reading.
The downside? What if the CGM isn’t as accurate as it needs to be? What if it gives too much insulin in the middle of the night? What if it fails to give enough? Both of these scenarios have life-threatening consequences.
We are feeling a lot of emotions about this next step, but mostly we are just in a holding pattern. While the new pump has been ordered and should arrive within the next few weeks, the AP part that we are all anticipating isn’t set to arrive until Spring. It could be shipped anytime after March. Also, Alex has decided that regardless of when the new device is shipped she will most likely wait until after she graduates on May 12th to begin. Understandably, taking on something of this magnitude right before graduation feels a little too daunting.
In the meantime, Reese is testing out a different CGM beginning next week. Reese has had a difficult time finding the right one as they work differently for everyone. Also, it’s not easy having to insert another small tube under your skin every few days or wearing a second device.
SOOOOO, as I told G last night I feel like it’s all exciting and positive and we are so fortunate that we have health insurance that has approved us for all of this technology (with a little co-pay of the rest of our deductible of course), but it’s a lot to think about. For now, we will all just continue to be grateful, move forward and take a deep breath for what is yet to come.
Sunshine & Sarcasm,
Lowi & G