Last week was a very frustrating week. I started to type a blog entry when I was mad, but my husband talked some sense into me and told me it would probably be better to cool off first. I tweeted a lot about my frustrations but in case you don’t follow me on Twitter, I’ll summarize what happened.
Being 24 weeks pregnant now, my stomach is getting stretched. I have slowly moved outward on my stomach to my love handles for my infusion set, which has done well. My new Enlite continuous glucose monitor (CGM) sensor on the other hand has not had as good of luck.
Last week was my 4th time to put the sensor in since starting on the Enlite. Prior to last week, I had put my sensor in my stomach (although more on the outer area of my stomach). The first 24 hours of my sensor were AWFUL. Once I got over the initial 24 hours, the sensor worked a lot better. However, last week I put my sensor more in my love handle. I put it in on Monday night and I knew the first 24 hours would be crap. I ignored the complete inaccuracy Monday night into Tuesday.
Since I am 24 weeks pregnant now, I am sleeping on my side, which also includes sleeping on my sensor side. Overnight, I was lying on my sensor and it did hurt some. I woke up and my sensor was still way off but the initial 24 hours hadn’t passed yet so I didn’t worry too much. Well, around lunchtime on Tuesday I got a Cal Error twice followed by a Change Sensor error. I have never gotten that before, even with 2 years on the Sof-sensors. I tried to “override” the error by starting new sensor but I still got the same errors again. I finally called Medtronic and after being on the phone with them for about 45 minutes, they told me to take the sensor off, put a new one in and they would send me a new sensor.
I was already frustrated with the fact that my sensor had errored out because I was 24 hours without a working sensor and now I would have to go another 24 hours with another inaccurate sensor. Also when I called Medtronic, they talked me through everything that could possibly be wrong. I have had a sensor for over 2 years, I read a lot of diabetes blogs and Facebook groups and I’ve googled issues so I knew everything that I needed to do right. My CDE also sent me a document on how to have more accurate sensor readings so I am very well informed on how to calibrate sensors. I didn’t appreciate wasting 45 minutes on the phone with Medtronic when the end result was what I knew, it was a bad sensor. I think the main issue was that I slept on it the night before and I guess somehow it bent the cannula.
Tuesday, after talking with Medtronic, I put in a new sensor. I put this sensor on my stomach but still close to my love handle. I guess you could say it was more the line between the two areas. Well, the same thing happened on Wednesday! I got the same issues! Cal Error followed by Change Sensor. I was so frustrated! Because I have had a CGM for over two years, I’ve become incredibly reliable on it. I have never taken more than a 12 hour break from it. Wednesday, was going on 48 hours without a sensor and then knowing another 24 hours of inaccuracy would follow. I was a mess (and the pregnancy hormones didn’t help). My Sof-sensors might not have been the most reliable thing but they were better than nothing. They were usually off by 30-40 points, so they were crap at identifying lows but they were good to know the general area I was in. I would take that over 64 hours of nothing!
I had to call Medtronic again and because I didn’t want to spend another 45 minutes on the phone with them, I tried to speed things up by saying that I already heard everything yesterday and I was having the same issues, etc etc. However, the customer service lady didn’t want to believe me so I had to waste another 45 minutes on the phone with her. She didn’t listen to what I was trying to tell her and instead had to go through all the steps with me all over again. This made me even more livid!
After taking a few hours to calm down, I enlisted my husband’s help. We decided that the stomach/love handles weren’t an option for me. I posted on Twitter and Facebook for help and googled other places to put a sensor. One resonating fact was that most Medtronic Enlite users only use their stomachs while most Dexcom users have the freedom to put their sensors anywhere. I finally found one person that didn’t put their sensor on their stomach, which helped me to feel better about my decision to try somewhere else.
I debated with my arm but thought I might also hit that sleeping and thought about my thigh but worried it might be too muscular or get hit by my pants. So I opted for my upper butt. My husband had to help me and the first time he put the sensor in, the inserter pulled the whole thing out. We tried again with the same sensor and again the same thing happened. I was worried that maybe my inserter had gone bad (I’m still worried about that) but I didn’t want to call Medtronic again and waste another 45 minutes so I just threw that sensor away (along with the $ that went with it). My husband tried again and I guess third times the charm because it actually stayed in. First 24 hours were absolute crap again but I didn’t get any errors this time and so far it has gone well (I’m on day 6 now and I’m terrified of having to put another new one in and worry about the inserter pulling it out again).
This experience was definitely a taxing one. I learned a lot of new things last week. Apparently the new Enlite sensor is ridiculously sensitive. A lot of people gave me tips last week such as don’t put too much tape on the sensor, don’t press to hard when inserting it, don’t press to hard on it once it’s in, etc. Also, Medtronic is very adamant in telling you not to calibrate more than 3 times per day. I used to calibrate about 10 times per day with my Sof-sensor and didn’t really run into any troubles but I am NOT calibrating more than 3 times per day anymore. I won’t have them waste another 10 minutes on the phone lecturing me on how much to calibrate. Also, the sensor was only tested and FDA approved on the stomach area so Medtronic is crap at helping you if you want to put it anywhere else. Apparently, Dexcom is the same but they seem much more willing to help with other placement areas (or at least people using Dexcom love using other areas without regret). The frustrating thing (not like there weren’t more) is that Medtronic’s website says that the Enlite sensor is perfect for pregnancy but then it isn’t approved for anywhere but your stomach so not really helpful at all.
I still have about 10 sensors left to use, but I am meeting with my endocrinologist next week and I’m going to ask her about switching to Dexcom. I’ve been a loyal Medtronic user for 18 years but my experience with the Enlite sensor has been awful. Between the complete inaccuracy the first 24 hours, to the wasted time on the phone with support, I am ready for a sensor that actually works. I have heard that Dexcom has the same 24 hour inaccuracy but you can use the Dexcom for 10-14 days or more so 1 out of 14 days is a heck of a lot better than 1 out of 6 days.