Well, it is almost here! I did a training sessions today so the trial personnel can roll it out to everyone else. There were 2 of us. Myself who has been pumping since 1990 and another woman who is using MDI. So they had both sides from a training standpoint. And wouldn’t you know it, I was the one one with the problems! That is because they are using an auto inject infusion set🙁
I just really hate these things & I of course messed up the first one. I just like the metal ones where I control everything. But once I got through the infusion set issue, it was very, very easy.
It will take about 4-5 days for the system to learn what my normal meal is. So no carb counting, just gotta say if it is normal, bigger or smaller, which I can do for each meal. So if my breakfast meals are always 25 carbs and that is normal, than if I do pancakes I would say bigger. But dinner if my normals is 70 & I want pizza at 140 I would say bigger. So that is cool that each meal can fine tuned.
Because it is a clinical trial, there is no playing with it. They actually want everyone using it to just let it go. So today after my first lunch I ended up at 295 (and yes, felt like crap!) but it took a few hours and it came in line. I can’t take any injections unless I start running ketones, or Afreeza because it will only confuse the system. So we were told just let it go. We have high blood sugar procedures and I have low blood sugar procedures (I have to get up each night at 2 to test-FDA safety procedures). [image|666x500]
So after just one afternoon, I don’t like the infusion sets which I’m sure there will be options later and charging. They suggest charging everyday even if just for 15 minutes like when showering. I currently have to charge but not everyday. But I will keep you posted on how it goes and when they will be starting the real trial. With holidays it might not be until after the first of the year.
Sorry, I am just so excited to finally get my hands on it and have been following this since the early 2000’s. It is the iLet by Beta Bonics!! They have trials in I think 4 other cities.
Really don’t think there will any major changes as this is the last trial before approval for insulin only launch. Not sure how long the glucagon trials will take but kinda nice there will be another choice out there.
Yeah. Here’s the problem with trials! You have to follow procedures. And they said over and over to not do anything. Over the course of 4-5 days, the system learns what your normal lunch meal looks like and after time, it will make the changes automatically. So after my first meal I got as high as 290 and was hating life but I came down to 166 finally. I am hoping by the time I get to next Friday, it will have me nailed and than I turn it in. I am hoping when the real trial rolls out, I will get this same pump back as it knows me. And while my current pump turns off a lot, it usually isn’t that low after a meal, depending on the meal. Some mornings I am crashing after breakfast even with a 1:17 carb ratio while lunch and dinner are 1-15.
Holy cow. Its like I’m witnessing a moon walk. Go safe into the unknown, Sally.
You gotta have good self control to tolerate those high-200’s. Good for you.
I’m not sure I would have that much discipline. But, it’s for the greater good!
Good on you, Sally, for being the lab rat.
I’ve been so curious about this one. I have a little more faith in the iLet than the Dutch counterpart. But man, those first few days are going to be rough.
I don’t tolerate highs well. I think that’s how I lived through the time before testing was a thing.
I feel so crappy it forces me to correct it.
I get tired cranky and my jaw aches in a weird way.
I also Sort of feel like I have painful blood like maybe my veins hurt just a little but it’s a bad feeling.
Those things happen when I’m over 200 but get extreme over 250.
I get real sick to my stomach and like every inch of my body hurts.
So if I get that pump it’s gonna be a rough start.
I’ve been following the evolution of this pump for many years now. The Beta Bionics iLet system may be the pump that entices me to jump from the open source DIY Loop that I’ve now used for four years.
It looks like this system is getting close to a commercial release and I’m eager to see how it performs. Thank-you for volunteering for this study, @Sally7!
I guess I don’t really get or trust this “learning” piece some of these newer pumps do. Personally I rather define what a small, normal, big meal is. Maybe they could suggest what the “learning” thinks it should, but let the user make the ultimate call on the pump settings.
Regardless I’m really interested to see how this ends up working for you. Hopefully the learning is works well.
As with all pumps, no pump has everything each of us wants. So whenever someone is thinking about changing, you need to really know what you love and what you hate about your current pump.
I use to be a super control freak! I had to be involved in everything that was happening! But for the past few years, I have started to be ok with not being as driven or concerned about numbers and %. And I just want easy and less thinking. So if you are a control freak these newer pumps that do most things on its own with little input from the patient, might not be a good fit. But for people like me, who are just exhausted from all the years of micromanaging my diabetes, I want freedom from always thinking about this stuff.
So yesterday I was 68% in target, under my goal of 80%. Current up to right now today is better at 75% with 3 years to go. So I’m guessing tomorrow I might be back over my goal, which is where I have been running with my Control IQ. Yes, my current goal is 80% and with my Tandem I should probably push it to 90% but I will say, it is not anything I have been doing. I just programmed the pump the way they suggested and it is making my life so much easier.
I am hoping this new pump will be even easier. No carb counting is heavenly! One less thing for me to take off my must do list!
And I had to start a new sensor and transmitter this evening & it was very simple and easy. I love easy! If I can figure out how to send my Dexcom goal chart,you can see how good things have become with no work on my part!
I am unhappy with the higher numbers because I hate highs!! I will take a low anytime before a high. And as I have tightened my management program, if it gets over 250, I feel like crap! But doing as many trials as I have, I know I have to take the good with the bad. Following the rules are key. They are very clear with letting the system do its thing! So higher blood sugars for a few hours for a newer and possibly better pump, I will suck it up and leave it alone.
I had to do a sensor and transmitter change yesterday & it was super easy! Today will be my first site change with the darn auto injection infusion set. Hope I can pull it off!
Also kinda cool, that in the past 3 days, I have been contacted twice by the endo in charge of the trial! So cool to have best minds helping me handle the hands off aspect. He knows me well. I think any doctor needs to understand your personality type as well as your diabetes type!
Ur pic didn’t come thru for me at least.
Who does the sensors. Is it dexcom or their own new sensor. How accurate is it.?
I tried to get into that same study but the 2 sites in Southern California don’t respond to requests so I assume they are not accepting new participants.
It’s just the 2 sites and you don’t need anything else. You can rut it all on the pump, but I use the apps. On my phone too.
The cartridge is weird at first but it’s not a problem really.
You need to aim for a small spot
I think there are 3 or 4 locations doing this next trial. And San Diego is full. That is probably because they have been talking about this study for a long, long time and many of us who do trials at this site have been begging to be on the list.
Sorry I didn’t say it is a Dexcom G6. Earlier they were also using the Eversense implantable CGM but not sure if they still are.
My biggest problem is with the darn infusion set. Just really hate the auto inject setup. Hoping they will have different infusion sets once the true study starts up.
And I’m not sure about the algorithm is set up for dual hormones because it seems to be very conservative. Maybe if it was the dual hormone system, it could more aggressive.
I have been doing my usual meal sizes with my usual 15 minute prebolus, but still run high after meals. I always comes down but I am not happy about the higher numbers. But this is why they do trials. Gotta get the data and real life experiences.
Unfortunately, I think a lot of us are going to be disappointed with these first gen products. The goal of all of them seems to be to get the average diabetic (I don’t remember, average is something like 50-54% TiR) up to the ADA recommended guidelines of 70% TIR.
Looks like your very first day “learning” day was just shy of that… But the developers will probably consider every other day better than 70% TIR a complete win.
Those of us who are active enough to bother looking for these online communities, probably have much bigger expectations.
At least Tandem gave us the “sleep mode”, to somewhat target better.
Hopefully as soon as the majority of users are getting that 70%, they’ll start aiming higher.
