I’ve moved to a new insulin pump, well, a new “old” insulin pump. This is my new set up. See photo below
My Loop Setup
Since before 2006, some people in the diabetes community have been asking:
if an insulin pump is collecting information about insulin doses and carbohydrate intake, and a continuous glucose monitor collects information about glucose levels, why do I have to be the brain that combines that information and decides what insulin I need? Why can’t they talk to each other and it decide?
I’ve been using an insulin pump since June 2010: first I had the Animas Ping and in 2014, I upgraded to the Animas Vibe which had CGM capability. When Animas announced that it was leaving the pump business I decided to explore my new options. I became fed up pretty quickly as my options were limited to only one pump and no indications as to when this would change: “soon” was becoming a very long time.
My Options
The pump on offer is a good pump that does a really good job of preventing low glucose. But, you know what? I was more than ready for more. I was way past ready for what’s out there now and I had completely run out of patience waiting for my health service to be a current and up to date one. So I’ve joined the #WeAreNotWaiting movement and become a member of the closed loop crowd.
Closing the Loop
My journey to the closed loop space has not been smooth and I never would have considered it if I did not have a person in my life who knew more that a little something about computer coding and stuff. I just wouldn’t have been comfortable delving in. So, honorable mention and endless thanks to devoted husband. I should also mention he is eternally grateful for nights without glucose alarms going off too.
The App build went smoothly - so I'm told. The instructions were easy to follow.
However, our first hiccup was realising that my CGM receiver was not the one needed to set up Loop and so another little computer box thingy had to be ordered. Once this arrived we ploughed ahead and we were in business with some help from the Loop Facebook community. I ran Loop in open loop for a couple of weeks but I really wasn’t figuring things out or doing much with it. Then I decided to just go for it and close the loop just before christmas.
The first couple of weeks of closed loop were horrendous. I was constantly high or low but never in range. I think I was freaking out because I would make lots of adjustments instead of one change at a time and review. However, on my flight to the US at Christmas, I decided to disable loop after my fourth low of the flight. I didn’t attempt to close the loop again until I came home.
When we did get home and over jetlag, I decided to only run closed loop at night and work up to fully closed gradually. I experienced three glorious uninterrupted sleep filled nights before we starting having major issues with radio frequency signals between the pump and the RileyLink, “communication link between your insulin pump, CGM, and iPhone”. which lead to highs and lows. So once again, Loop was disabled until a replacement RileyLink arrived.
Second Attempt
In the meantime, I had been reading some reviews of Looping, especially from Adam Brown and Kelly Close at DiaTribe and also connecting with a couple of Irish people with similar setups. Thank you John and Tomas!
I began closed loop again at the beginning of February and I’ve been adjusting my insulin:carb ratios and my insulin correction ratios gradually, like I would if I was using just a pump alone, and it has been going a lot smoother.
How much smoother, I hear you ask? Well, we went out for Chinese food at the end of February to celebrate devoted husband’s birthday and I had noodles with Kung po. Normally, there would be a glucose explosion in my blood for hours and hours after that kind of meal. But, with closed loop the highest I went was 11 mmol/l and was back in range by midnight. Closed loop has really reduced my post meal highs regardless of the carb quantity.
There’s also the bolus from my phone liberation. Loop is an App on my phone, so when I want to have a look at what’s going on or to give myself a bolus of insulin I use my phone. I don’t have to dig out my pump from wherever it’s been clipped to, usually my waistband and at an awkward angle.The first time I did that was so liberating!!! I never thought something so simple would mean so much. I mean I did unclog my pump anyway because I needed to know it worked but I’m happy to report I do that less now.
Of course, the biggest benefit is having less CGM alarms during the night. This was my biggest reason for taking the leap!
The Downsides
Three Apps
I thought I would just have one app on my phone, Loop but instead I ended up with three additional Apps on my phone which drain my battery a lot. This is kind of annoying because I have to switch between them.
A lot more to carry
I now carry around a lot more bits and pieces, as seen above and that’s annoying as they all have to be in range of each other. However, I’m hoping to ditch at least two of those bits in the coming months when I upgrade my CGM.
However, it’s all worth it for me, my graphs aren’t always this good but that’s an improvement from never being this good. So, I will continue to Loop until there is a pump available with the number “7” “IQ” in its name. And that will be another “soon” also known as “we have no idea but we will remain optimistic to the end”.