Just discovered this forum and I’m so grateful for it already! Relatively new to this disease…
I’m about to go on an insulin pump for the first time ever (Tandem X2 to go with a Dexcom G6) and while it’s necessary (my time in range is not great), I have a LOT of anxiety about it. What do you wish you knew before you got an insulin pump? Any advice, tips, and tricks? Would be grateful to hear anything, from pointers on getting basal calculations right to advice on avoiding infection to your favorite device patch brands. My future self thanks you!
What is your current routine? Do you use pens for long acting and mealtime insulin? Do you log/track those amounts based on foods (count carbs), activity level, etc?
Will your endo or CDE help you with initial pump settings and adjustments?
Maybe get the basics first, then add in the automated pump options (CIQ).
Some folks start with loading water into cartridge, and practice operating pump without it being attached.
I started pumping over 25 years ago, and don’t recall what I wish I knew, other than I wished I had started sooner!!
I currently use short and long acting injection pens (Tresiba and Lispro to be specific). I have gone through periods of tracking carbs, but these days I don’t — which sometimes runs me into high and low trouble — I just bolus at mealtimes and snack times based on my experience. I stopped counting carbs specifically because I do run into insulin resistance and find that my glucose response is really really different depending on whether I had a slice of white bread, a slice of wheat bread, beans, or a piece of candy.
My endo/CDE is suppose to train me on the Tandem in a week or two, but I have a TON of anxiety about it. I recently have started listening to the Juicebox Podcast and there are such complicated discussions about everything that it makes me think I’m completely over my head in using a pump. I’m also very nervous about infection/the infusion set getting disconnected, etc.
You could download the Tandem Simulator app and follow along with Tandem online videos to start learning the menus, without actually delivering insulin.
I had advantage of prior pump experience, so can understand how overwhelming it may be for you. Take your time, delay actual start until you are ready.
Your experience with bg response rather than carb counting is similar to mine. So I generally just enter units to bolus. You may find that extended boluses will help with many food choices. For example you can tell pump to deliver 6 units, 4 immediately and 2 units over next 2 hours.
Just to add in to @mm2 's thoughtful response - I’m a type 1 diabetic on the TSlim and Dexcom.
I’ve been on a pump for 4 years now. Tandem / Dexcom are making great strides in enabling good control for a lot more people. The systems are getting more automated so day to day is pretty straightforward.
However, it is overwhelming as you get started - it’s a whole new set of protocols and equipment, and you have to learn new habits as well. Once you learn them, I think it will become quite natural for you – but the process of learning is hard and anxiety provoking.
You’ll get lots of support - Tandem has (or had) a bunch of peer consultants who are there for you - talking you through how to do things. Please let us know if that still happens, because it was quite useful to me to hear war stories from another t1 diabetic who had been on a pump for a long time.
As for something I wish I knew prior to the Tandem, I could have benefitted from a discussion about where you put the pump - in your pocket, in your underpants? Some women put it in their bra.
What is the nature of your anxiety? Is it about usage or something else?
The big thing no one discussed with me is how to recognize when something is wrong with the pump or insulin absorption at the infusion site…and what to do about it.
If you’re worried about basal calculations, perhaps just set it up with a lower basal than you think you’ll need. The Tslim will compensate, and if there’s a trend, you can always increase your basal settings later.
I’m also very nervous about infection/the infusion set getting disconnected, etc.
I’ve been using a pump for almost 20 years and I’ve never had an infection. Has anyone else here had infections? (I didn’t even know that was a thing)
I wouldn’t worry about disconnections either — it’s something you’ll do all the time on purpose (showering, swimming, exercising). If it becomes accidentally disconnected (which also has never happened to me), your BG will go up and your CGM will let you know.
Also, remember that you can take a break from the pump if you get overwhelmed and go back to injections for an hour or a day or a week.
Honestly, for my son the freedom around eating that pumping offers is a godsend. He also uses the same combo as you (Tandem/G6) and it works well for him. Tandem has been great with the technical help, and replaced the pump the one time it failed. Speaking of failures, keep some long acting around in case of failures or when you want to take a pump break. Site failures are the one of the first things you have to learn to recognize. It looks like your blood sugar going up for no reason. It is frustrating. If this occurs, assume the pump site has failed and change it (carry spares).
If your blood sugar is over 300 consider correcting with a syringe of short acting while you are changing the site since it seems to work faster than infusing via the pump.
Finally, the one difference we have noticed, is that when taking large doses of insulin (>5 units) use a syringe instead of the pump to assure the insulin gets in efficiently. There seems to be a maximum dose, around 5 for my son, where the pump doesn’t seem to act normally when you exceed this amount. Otherwise pumping is amazing.
Extended boluses is a concept I really have to wrap my head around! Everything with a pump has potential to be so much better, but definitely sounds complicated compared to what I’ve been doing (MDI with mealtime boluses and corrections, along with long-acting insulin). Thanks for the link!
Thanks very much - I’ll make a note to ask about this! (I also only recently realized I will be figuring out how to sleep without yanking anything out…)
Not sure what the nature of my anxiety is. Perhaps the biggest issue is feeling overwhelmed hearing about all the different aspects of insulin pump life, all of the considerations involved in upkeep, the nuances of pinpointing your correct basal insulin rate on a pump, and the like. I am also going through quite a bit of other stuff in my life so the idea of taking it all on is a lot. But I’ve had some time to think about whether I’m ready to get on a pump, and I came to the conclusion that since some of the other stuff in the background is not going away anytime soon, I might as well bite the bullet and try my best with a pump. I know if I can get the diabetes under control that will help make my life so much easier.
I will keep you posted on whether I encounter Tandem peer trainers. My training begins next week and I’m looking forward to educating myself!
All of this is INCREDIBLY reassuring. I think I’m realizing as I type this is that reassurance from peers is just as helpful as actual tips and tricks. So thanks!
This is exactly the type of input I was looking for—thank you so much! I didn’t even know site failure was a thing Making a mental note right now to keep spares of the following:
infusion sets in event of site failure
injection pens of short-acting for potential blood sugar corrections during site failures
injection pens of long-acting when I want/need to take a pump break
Can I ask: Are lows something that I should be worried about? I don’t have them very often in my current regimen on MDI, but I have had a couple of several hypo episodes that really freaked me out so I’m a little nervous about that on the pump, too.
Thank you so much for the warm welcome! I don’t know many people in my boat IRL so it is really, really lovely to discover a community of helpful people who are in a similar situation online.
I would say that lows are less common on the pump than off for my son, that is because he has tailored his basal to a finer degree that cannot be done on long acting. With that being said your mileage may vary, and of course in the transition period while you are learning, mistakes happen. And you should be willing to forgive yourself for these transgressions. Soon enough it will be second nature.
Once you are set up on pump with correct settings, the advantage of Tandem + dexcom will prevent most lows when the CIQ option is active. The pump reduces/stops insulin flow, and this causes your BG to go up. But it might take some time tweaking your settings to match your situation.
The pump can have different set up for “exercise mode”, where less basal is delivered. With pens and long acting insulin, you probably ate carbs when you were more active. You can choose which way you want, switch pump to exercise mode, or eat, or maybe both.
Your mindset will change as you learn the flexibility that “real time” changes can be made (via pump) to what was your static Tresiba dose. Some people have bg increase when they get out of bed, called “feet on floor” effect. Generally, a pump can address this better than pen injections.
Making a mental note right now to keep spares of the following:
