When traveling with T1D, we try to be prepared for anything. We pack extra supplies and keep them in our carry-on bag. We bring extra insulin so we don’t run out. We bring a meter and test strips even though we rarely use it anymore with CGM. But sometimes, we may not have enough of the supplies we need to ensure we have a backup for our trip. Or our backup fails and we don’t have a backup to the backup.
When your CGM fails
Recently, I traveled to Colorado from Ohio with my children and husband. It was a long weekend where the kids have off school and we wanted to have some fun, low-key travel. We had a lovely dinner the first night with some of our Fiffles despite the snowstorm. Then, in the early morning of day two around 3 AM, my iLet started alerting that my CGM had signal loss. I silenced it and went back to sleep on and off until we woke up around 7:30. The transmitter that I was using for my Dexcom G6 was just started two weeks before, and they usually last 90 days, so I assumed the issue was sensor-related.
I changed my sensor and when it continued to say signal loss, I started to feel a bit panicky. I just started on the iLet again after having tried it back in the summer, and this was something I did not experience in my 30-day trial. The FDA required Beta Bionics to add a feature where the pump will turn off after there is no CGM data for 72 hours. Their reasoning is that since the iLet uses CGM to adjust insulin without a lot of user input, the CGM needs to be working to use the device safely. This is a bit different than some of the other AID (Automated Insulin Delivery) systems, which will go into manual mode in those situations.
This is why I went into panic mode; I did not want to have to do multiple daily injections (MDI) because I have not done that in quite some time, and had not brought those supplies with me on this trip. I started texting two of my CDCES friends who work at Dexcom, sending them screenshots and asking what I should do. I tried a few things – taking the transmitter back out, cleaning it, and putting it back in; clearing out my old Bluetooth connections such as older transmitters from Dexcom; unpairing and repairing my transmitter, all to no avail. After all of this troubleshooting before 9 AM, I decided I needed to call my Endo office and see if they offer an on-call service.
It’s okay to call for help
I know sometimes we worry about being burdens to our healthcare team, but these scenarios are why many places offer on-call services. Yes, I could have just spent the whole weekend doing finger sticks and entering those glucose levels and I could have been fine; but, I would not have been receiving the full benefits of the iLet system, and I was already having issues with highs from changes in altitude and who knows what else. While at breakfast, I called and spoke to the on-call nurse, who said she would reach out to the doctor to ask for a prescription. I asked for a Dexcom G7 since it does not require a separate sensor and transmitter. I asked if they would be able to call it in to a Walgreens nearby in Colorado and she said they couldn’t but they would send it to the local Walgreens and then the Walgreens in Colorado could get the prescription from their system and fill it there.
Before we started our 2.5 hour drive to the ice castle my daughter was incredibly excited about, I looked up a Walgreens that was on our driving path and suggested we stop there for a quick potty break and to grab a CGM. I called that Walgreens and asked if they would be able to fill it – I wasn’t sure they would have Dexcom G7’s in stock – and then asked if they saw the prescription in their system. They did not, and suggested I try calling back in 20 minutes. When I called back, they said they still did not see it, and I should try calling my Walgreens back home. I’m sure you may be able to sense how this is going to go if you live with t1 or have a child with t1d…
Prescription issues
I called my Walgreens in Ohio and the person who answered said they did not have that prescription and I would need to call the on-call group back to ask for the prescription. I was pretty sure the nurse had done it, because she called me after she spoke to the provider and said that she had called it into Walgreens. I mean, why lie about that? So I call the on-call service back, and another nurse answers, but transfers me to the nurse I had spoken to earlier. I called and apologized for calling, but informed her what my local pharmacy had told me, and she reiterated that she did indeed call it in, and wonders if they never put it in to their system. I call the pharmacy back, and low-and-behold they had received my prescription but had not entered it into their system. I’m not sure why I had to call TWICE to get this information as it should have been available the first time.
I asked the person who answered the phone what their system was when prescriptions were called in because I had recently had an issue where a pharmacy similar to Walgreens told a young adult patient that he didn’t have refills on his long-acting insulin, but he did in fact have those refills. This had caused him a lot of unnecessary stress and he had to go into Walgreens physically to get someone to tell him that he had these refills. (Oy!) The person at Walgreens informed me that their system is literally writing it down on a piece of paper. I was really surprised that this was the system, and told him I wish it were more automated so that things like this didn’t happen. He assured me that he would put it in right away and that I would be able to get it at my random Walgreens in Colorado.
I know that many pharmacies have been short-staffed since COVID, and perhaps even before that. And I really appreciate that I was able to eventually get my sensor, but I do think a review of the processes may be warranted to help ensure things are communicated across members of the team.
Top tips for unexpected CGM failure away from home (but in the U.S.)
- Know how to reach your on-call medical provider
- Consider having at least one prescription on file with a national pharmacy
- Pack back-ups if you can
- Make sure you have BG monitoring supplies as well
Here’s to hoping your diabetes tech doesn’t fail away from home, or, ever really!
Written and clinically reviewed by Marissa Town, RN, BSN, CDCES
