I would very much like to know people’s experiences with doing pump inset changes.
I change the inset together with my daughter every three days. We usually do it first thing in the morning before breakfast. She uses the Tandem TruSteel inset infusion set along with her X-2 T Slim and Dexcom G6.
I insert the inset either in Kimi’s belly or buttocks and rotate insertion sites. I’m always so relieved when afterward her BGs are fine.
Here’s my question/issue: Once in a while—maybe every 6 to 8 weeks or so— we change the inset and an hour later her BG doubles up and continues up. It often goes over 300 before we can get things “under control” (insulin via syringe, changed inset site again, checked for air bubbles in tubing, etc).
I wish there were a way to know if one has a “good inset site” immediately after insertion.
What time of day do you change your inset? What time do you do it in relation to eating a meal? How do you deal with it?
Kimi is very insulin sensitive so I always need to be extremely careful in not overdosing the insulin to bring her back into range after a high like that. It’s challenging…
hi @dsiizuka I have a CGM and I always watch carefully after a set change. the very first blood sugar drop after a set change gives me confidence the new set it “good”. all you can do is test and it takes a good 4+ hours to verify a new set is actually working.
I never, ever change a set and then go to bed. I change sets 1st thing in the morning (favorite) or at noon. I will change at dinner time if I have no other choice. I change sets right before a meal and watch the arc of blood sugar afterward. I can tell if I am good by the rise… but again it’s a 4 hour check. Failure can send me into the 300’s easy.
a random 300, if dealt with, isn’t going to be a big deal. you are doing everything right. yes it is challenging.
Dani, I change my sets ever 3 days always in the morning before I eat any breakfast. How old is Kimi?? Just curious about her using the TruSteel.
Kimi is 35 years old and has an intellectual disability. She developed T1D when she was 22. I basically manage pretty much everything about her diabetes.
I adore Control IQ! Truly a game changer!
Her endo suggested switching to TruSteel since we often had dealt with bent cannulas with the Autosoft. Mostly I’ve been much happier with the TruSteel in terms of successful inset experiences.
(We always change every three days and in the morning too. )
I just hate it when her BGs start doubling up because for some reason the inset/site wasn’t right. How do you deal with that?
I do a correction bolus when I start getting too high (over 225). Glad to hear you like the CIQ. I am still using basal IQ as I have to get over the negative mindset of a pump that gives me insulin without my knowledge or control.
We just changed it out. They say you can call their customer service number and have them walk you through some troubleshooting first, but I’m guessing most people don’t take the time for that. And Tandem was always really good about sending replacements when a site failed.
But it happened to us so often — so completely ridiculously often — that we finally gave up and went back to Omnipod. We were highly motivated to find a solution, because Control IQ was awesome when it worked, but for us, the sites were just constantly going bad, and despite consulting an army of kind and patient endos, CDEs, reps, and users, we never were able to make any infusion set Tandem sells work for us.
I hope that’s not you, too, but if it is, don’t be afraid to try something else. Just because it’s a wonderful tool for other people doesn’t mean it’s right for your daughter. And Omnipod 5/Horizon (their version of Control IQ) is pending with the FDA, so maybe someday that will come out, too.
Joe, My experience is the same. Hate the waiting time but that is only way to check whether or not I’ve gotten successful insertion of cannulas & working of tubing & cartridge. Dependent on Medicare for supplies so I wait unless I have sudden rise in bg above low 300’s. Always reassuring when bg begins to come down.
Still have many issues with Tandem infusion sets of all the types available despite advice & observations given by Community when I raised this issue on this site. The fact that I rarely had problems with 3 other pumps & infusion sets remains. I usually call Tandem Tech Support at least once a quarter. I change every other day. Well that’s enough venting. BTW have no desire to give up t:slim & G6.
Sorry to hear about your daughters pump issues. Pump technology isn’t new so failure rates should be an exception not the norm. I’ve been using a Medtronic pump since 1997 and only have had a couple of insertion failures. I know you rotate sites, but maybe you’re hitting scare tissue. Other than changing sites every 3rd day, I don’t have a specific time of day when changing.
Thank you for your replies. I’ve learned so much from this forum! It’s comforting to hear from people who not only have many more years of experience but also who’ve dealt with so many of the same issues.
I know that research is being done to not only figure out a way to detect when the inset isn’t in a good spot but there are also efforts to extend the time between site changes. I am just impatient for that technology to happen more quickly.
Do you “feel it” when you’ve inserted the inset into scar tissue?
Can you feel a bump under her skin after removing a 3 day old site. If so i need to give that about 2" circle around the area about 10 to 12 days to prevent issues later. Due to surgery scars I move my sites all over my abdomen, but I have often found that pain will let me know when I have a bad insertion, if I feel a level of unformatted pain I will end up changing the site out early, I also have learned that due to scar tissue I leave my site unconnected to the pump for several minutes , checking for blood in tubing, because hitting a capillary is a repeated problem for me and Humalog injected into my blood stream does not work well at all for me.
Thank you for the specifics about how you go about changing the site on your abdomen.
Kimi doesn’t seem to have a lot of scar tissue there yet but I still worry after each site change. The Tandem rep who trained us on using the X2 T-Slim told me that we should switch to putting the insets onto her buttock/hip area to give the abdomen a break.
And yet it seems that many T1D people “get away with” inserting insets pretty much only in their abdomen… even for more than 20 years.
Right now, I alternate between inserting in Kimi’s buttocks and abdomen, although she seems to have better BGs (my imagination??) when the inset is in her belly.