this post was submitted on 05 Sep 2024
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Sharing because I found this very interesting.

The Four Thieves Vinegar Collective has a DIY design for a home lab you can set up to reproduce expensive medication for dirt cheap, producing medication like that used to cure Hepatitis C, along with software they developed that can be used to create chemical compounds out of common household materials.

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[–] smiletolerantly@awful.systems 30 points 2 months ago (3 children)

The app is genuinely better in many ways. It at least allows you to set two thresholds for low/high each, and it does repeat them after a while. At least as far as I remember, it is also better with the "jittering re-triggers alarms" thing. Back when I was using it, you could not mute alarms in advance, but apparently that does work now for up to 6 hours, good on them. BUt this is my rant, so I am ignoring that :D There's still "nice to have" features missing, for example "if you are trending up, don't repeat a low glucose warning" and vice versa, but my initial impression was that this might actually work. (The Libre 3 had gotten so bad that I had disabled all alarms permanently for multiple months, so when the G7 came out I immediately switched, but at that point xdrip+ did not support it yet.)

Except - you cannot disable the "very low" alarm, and you can set its threshold no lower than 55 mg/dl. Big deal, I mean, it's important to be warned, right? Except in many situations, I know more than the app. Imagine this: You are woken at night by your low glucose alarm, and are trending down. These sensors lag by about 15 minutes compared to blood measurements, so even if you drink some juice right now, and KNOW that that will be enough, the "very low" alarm will DEFINITELY still go off. You know, eventually. Maybe in 15 minutes, maybe in 20 or 25. But you will be woken again, and all you can do is try to stay awake until then, or turn your phone off completely (why not just mute the app, you ask? Well, I answer, because the Dexcom G7 app will STOP SHOWING YOU YOUR GLUCOSE LEVELS if you do that, warning you instead that you must let it warn you. It's great! /s). Of course, turning your phone off means you won't get any more alarms until you switch it back on in the morning.

Before I end this rant, I need to mention a couple more things. The first is how patronizing Dexcom is towards its customers. Not being able to disable an alarm is one example, but my "favorite" example is this: I had been using their app for a while, and went on holidays abroad. During that trip, my sensor expired (I knew in advance and brought spares). Imagine by AMAZEMENT when I discovered that the app would not let me start a new sensor because my GPS location was not IN MY COUNTRY OF RESIDENCE.

Luckily at this point I discovered that xdrip+ had just released experimental support for the G7, and switched immediately and without problems.

In a similar vein, the app is actually only supported on a handful of devices from the biggest phone companies. There's a community project from at least the days of the G5 which removes this restriction, and the app does actually run perfectly on basically any phone, you just aren't allowed to, I guess.

Let's close this with a look at the hardware. Where Dexcom is moderately ahead of Freestyle in terms of software, they severely lack behind it in hardware. And I get it, this can be hard. They measure every 4 minutes (which is more than enough IMO), and the sensor is a good bit chunkier, yet it only lasts 10 days. Also their adhesive sucks. To this day, you need to put on the giant bandage-patch-thing they include in the box, and even then it's easy to rip off. They've gone through at least 4 adhesive variations, and all of them suck in different ways. But again, I think this is forgivable; the Freestyle Libre 3 is a miracle in terms of hardware, so whatever.

What is NOT forgivable however is making your big-ass, shittily-sticking-to-skin sensor RUBBERIZED and have SHARP, DOWNWARDS POINTING OVERHANGS THAT WILL SNATCH ON EVERY PIECE OF FABRIC IT CAN GET ITS HANDS ON AND RIP OFF IMMEDIATELY.

Why?? Why do this, Dexcom? Why did no one go "actually, only the should-stick-to-skin side of the should-not-stick-to-anything-else thing should be sticky"??????

OK, right. But as long as they send spares and make RMAs easy, it should not matter that - WRONG. THEY DON'T. Worse, actually, but for this I have to circle back to the Freestyle.

I mentioned earlier that I had never had a defective unit, and that is true. But once (once) in two years I accidentally ripped one from my arm. I was low on sensors at the time, so I called them. The call went through immediately, and the guy on the end was super apologetic, even though I was also super apologetic for ripping it off and being late with renewing my subscription, hence being low on sensors. He immediately told me they'd be sending two replacements, just in case, free of charge. They arrived the next day. (Actually, they always sent at least two spares with the quarterly delivery, too.)

Back to Dexcom. As mentioned, I started using it very shortly after the G7 came to market. That was a mistake. For the first NINE MONTHS, SIXTY PERCENT OF SENSORS I GOT FROM THEM WERE DEFECTIVE, with 80% of those being dead on arrival, and NOT including sensors that ripped off due to shit adhesive.

I have a day in my log from May 2022 where I put 5 sensors on in a row (they do prick pretty badly, btw), waiting for the warmup period to end for each of them just to read "Sensor defective". The 6th one finally worked. By this time I had given up on putting the extra adhesive sticker on, since rubbing them off is also a pain because they shred instead of coming off in one piece. So of course, it snagged on my shirt and ripped off within an hour. I cried that day, and I will not apologize for it.

"Hold on, your log? Why do you have that?" I hear the attentive reader asking. Well, let me tell you. Dexcom G7 sensors last 10 days, and the year lasts 365 days. Every 90 days you get your quarterly delivery of 9 sensors, except for Q4, where it's 10. There are NO spares. When you want to RMA a defective sensor, you have to

  • find their pretty hidden support page online
  • fill out a questionnaire for every single sensor, including three separate sensor ID numbers (which are either on the sensor applicator or its box, not both, so better keep both), all of your personal info EVEN THOUGH I ALREADY AM LOGGED IN AND YOU HAVE ALL MY INFO DEXCOM, rather leading questions speaking to exactly what YOU were doing wrong when the sensor failed, as well as the date you applied the sensor on and the date it failed.
  • a couple of days later you will get a phone call (better hope you hear your phone ringing, they won't be calling again, and calling them is a two-hour wait!), and a tired service rep will go through ALL of that info you spent half an hour inputting AGAIN. Then, they will calculate how many days were left on each sensor, sum all of them up, then divide by 10 days and send you not a single sensor more than required. 60% of those would inevitably fail again, and the cycle would begin anew. (Also, the first rep I ever had on the phone scolded me and told me too many RMAs would put me on their watchlist. Fuck you, Dexcom.)

....

Oh god this has gotten out of hand, I'm sorry to whoever read all of that.

TL;DR:

  • Fuck whoever is in charge of Freestyle's software team, fuck ALL of Dexcom, but especially the product designer who I'm sure will LOVE my idea for a rubberized dildo with snaggy edges.
  • Use open source software with medical devices.
  • Please mommy EU whip medical companies into compliance.
[–] akwd169@sh.itjust.works 14 points 2 months ago

Wow, the sheer hostility towards customers on display when your guaranteed business for life...

Just because they know diabetics have to use them is not a reason to be a scumbag company wherever possible.

Why is it permitted in our society to walk all over diabetics as if they are second class citizens???

Sounds like they treat you like a cash cow and not a patient in need of medical support, and I'm really sorry for that

[–] Pyotr@lemmy.world 9 points 2 months ago

As a G6 and xdrip user, this absolutely mirrors my experience, and MANY of my frustrations. The fact dexcom's app won't give me a delta between current and last reading to understand how quickly im trending? Insanity - and they show no interest in making it better in any way, which really grinds my gears every time I give them money.

[–] stratoscaster@lemmy.world 7 points 2 months ago (1 children)

Jesus Christ that sucks nuts... Hopefully in the future the situation improves. Iirc this technology is still early and companies are incompetent

[–] smiletolerantly@awful.systems 8 points 2 months ago (1 children)

Thanks lol. The thing is, they're getting away with this. Forcing Freestyle to open their protocol would instantly solve all of those problems, as you could use good hardware with good software, since you'd no longer be locked in.

[–] stratoscaster@lemmy.world 1 points 2 months ago

I'm honestly shocked that someone hasn't gone the black market APK route of analyzing the protocols heuristically and then releasing an APK with those protocols on torrent/deep web. Obviously, that's insanely more risky and error prone, but you would find out pretty quick if freestyle modified their protocols, and could patch it within a week or two (maybe). I really wish I was more low-level hardware skilled to know better, or even lend a hand.

I just make shitty SaaS software for a living, what do I know lol