Wednesday, May 16, 2007

Minimed REAL-Time CGM Curses and Gratitudes--Part II

Having the Minimed Real-time CGM is a blessing, but it can be really annoying, too. I need to be frank and this may horrify some people, but I prefer NOT to deal with my diabetes. I am not motivated to take my blood sugars and I have a pretty good sense of my blood sugars without checking 4-10 times per day. I got the CGM because I thought it would lessen my resistance to diabetes self-care, but at times the thing just annoys me. I don’t WANT to look at my pump or hear that damned alarm. The alarms rarely warn me of problems, this is specifically BECAUSE I have the CGM and am in good control with its assistance, but the darned thing is always asking for something.

Yesterday, I left my blood sugar kit at home and missed a calibration for 5 hours. This means the alarm goes off what feels like every 10 minutes, but it may be 30, and I want to toss the thing out the window. Common sense says, “Just check your BS first thing in the morning and last thing at night, but I forget, so no logical solutions are necessary.

Then the sensor ends, which means stopping, starting the thing again and then calibrating again, then calibrating again in six hours and again before bed. Meanwhile, I get a low reservoir alarm and my battery is getting low and I just want the thing to quit beeping at me. Oh! I put my pump on the left and not the right side, so I also wrestle with “weak signal” alarms.

By the way the Navigator had a HUGE range for transmission--10 feet at minimum. I rarely had a weak signal and in fact left the receiver upstairs in my bathroom all the time and still tracked readings. I put the Minimed pump under my back while I’m sleeping and I get a “weak signal” alarm; THAT is ridiculous.

A friend who started the CGM with me just left the thing off for a week and that sounds good to me because all the blessing I have received are slightly shadowed by frequent alarms of one kind or another.

I am really just not as deeply committed to my diabetes care as I thought I “should be.” I want to reiterate that this CGM is a GIFT and one of the best diabetes technological advancements since insulin. Sometimes I just don’t want to think about it AND I know that if I don't, I won’t do any permanent damage.

13 comments:

gina said...

Hi there,

My first post on your site and I can totally relate to you getting sick of your device. I think we have all been there thats for sure. Anyway, we have to just think of the devices as our friend and they make us feel better and will cause us to not have any complications down the road.

Bernard said...

Wendy

I hear you. What's the worst thing for me?

Middle of the night. The Dexcom under my pillow goes off and wakes me to tell me it's low. I stumble out of bed, test with the meter, stumble downstairs to get some OJ, stumble back to bed.

10 minutes later it beeps again because it went slightly above the low water mark and then slightly below the low water mark on its way to normality. So I wake up again to see what's up and then silence it.

Then (it seems like) 10 minutes later the radio alarm wakes me.

Gak. Seems like I was up and down like a yoyo.

And if the pump starts buzzing due to a Low Reservoir in the middle of all this fun, I really feel like tossing everything out the window for a good nights sleep.

Thankfully this doesn't happen very often. And it is a blessing most of the time.

Denise said...

Hi Wendy,

I have enjoyed reading your blog and about 3 weeks ago got the Medtronic CGM. I have a love/hate relationship with it, which actually seems opposite of yours! I love all the alarms...it forces me to think more about my diabetes. Although I tested 14 times a day before the CGM, I still tend to test 12 or more times a day, even with the CGM. This is because I like to keep very tight control overnight (68-90) and the CGM, which is set to beep at a low of 75, will often wake me several times throughout the night. When I get up and do a finger stick, I often find bs is still in the safe range. SO then it's back to sleep for the next 30 minutes until it wakes me again. You would think I would find this annoying, but I actually feel much more secure knowing I won't wake up with a bs over 200 or under 50. The thing I hate is the sensor itself. I have been inserting it into my hip and flank area, and I find that it is never in a good spot. When I roll over at night, which I often do, I am always very aware of its presence. I wouldn't call it painful, but very annoying. I haven't found this to be a problem with the placement of the insulin pump infusion set, and often I have to feel around just to remember where I put it! I cannot believe people have left the sensor in for 3 weeks! By the 6th day, I am ready to yank it out just due to the way the site starts to feel irritated. Maybe my choice of sites is poor and I should try the lower abdominal area. I just hate to take up precious sites where I usually put the pump. I have also knocked the sensor out twice, which infuriated me! You know that feeling where you just want to scream and cry, but you can't because it won't do any good? That is what I often say is most difficult about type1 diabetes. You can never escape it. If I were a person without diabetes and just couldn't take it anymore, I could lock myself in a room until my family broke down the door and took me to a mental hospital where I could get rest and medication and not speak to anyone until I was ready, or ever again for that matter, and I would still be ok. I would not rot away slowly until my body finally failed me. But this is not an option with diabetes. I have to take care of myself. No one else can do it for me. Sure, they can inject the insulin and offer me the food, but we all know that the hospitalized type1 diabetes pt. is not in good control. It is necessary for me to think about my diabetes almost 24/7, and even then I fail. But does this have anything to do with the CGM? No, just venting! SO to sum it up, I like my CGM because it allows me to think about my diabetes even more, and have a better idea of when I can coast with a normal bs and skip a finger stick I may have done, or when I need to do a finger stick to chase down a high that I may have unknowingly experienced for a few hours before testing.

Anonymous said...

You people are a bunch of ungrateful idiots. This piece of technology can save lives and you have the nerve to complain. Unreal.

Wendy Morgan said...

Yes, I am complaining. Diabetes is a total pain in the ass. I spend countless hours caring for my child with diabetes, I don't spend enough time caring for my own and this device cost me $1,000 to date. There are lots of things that can be better about the CGM and Minimed can read my opinions here.

I have counted my blessings for the CGM MANY, MANY times on my blog, but this particular post is dedicated to the fact the diabetes can really suck and even the technology designed to "save my life" can still be a royal pain in the ass.

collink said...
This comment has been removed by the author.
collink said...

I've had the Minimed CGM for 6 months am thrilled to have found this site by googling "minimed sensor alway buzzing and beeping." I really identified with Wendy's comments. I'm finding it particularly awful to be woken multiple times a night. for this thing. (Waking in the middle of sleep is definitely NOT good for you: studies that interrupted sleep contributes to poor blood sugar control, weight gain, and increased emotional problems.

I actually took the CGM off for a week in order to get a break and rest. It makes no sense that it wakes someone at 2am to tell me i need a calibration by 6 am. It should leave me alone 11 pm -6 am unless my bg is crazily low or high. I would think there could be a way for the CGM to be programmed for this. Perhaps this could be in the next generation of software.

Although I'm glad for the insight into my bgs and tighter control, I'm getting weary from the lack of uninterrupted sleep.

ALso, I HAVE to add, the injection needle is huge and painful. Putting it in reminds me of harpooning myself.

Wendy said...

That is SO funny! Harpooning yourself! That is exactly how it feels!

I have gotten a better feeling about the CGM, especially only wearing it for a month or so at a time. I found that if I calibrate it just before bed, I don't get the calibration call until 11:00 a.m the next day. Also, I put my sensor on at night, wait until morning to turn it on, then calibrate at 7:00 a.m. or so.

I have to calibrate 1:00 p.m. then and then I'll do it before bed and get back on my regular cycle.

Thanks for your comments Karin! One more thing I might do is set my alarms at like 250, so I don't get the alarms. That means I may be 249 all night, but I may also get enough sleep so I figure out how to fix it.

THis whole disease is a pain in ass. I am WAITING patiently for Minimed to upgrade this adequate device into something revolutionary. Not sure I can expect that, but we can hope.

I actually love my pump, but I am ready for the diabetes industry to ramp things up technologically. They certain have enough people wanting improvements. I'm not grateful any more. I'm borred.

collink said...

Hi Wendy, thanks for the reply and timing tip. I need a bit more clarification on the timing of the sensor start that you explained. You mean that you insert the sensor at night and leave it in all night before attaching the transmitter? I would never have thought to do that. ALso, what time interval setting is your calibration snooze set at? Thanks again. Karin

Wendy said...

Hi again,

I insert the sensor AND hook it up to the transmitter before bed, but wait to "Start New Sensor," until the next morning. When I do that, I get a cailbration request right away, not two hours later, which is never convenient.

Then you have to calibrate 6 hours later, but I go ahead and calibrate AGAIN between 7:30pm and bedtime, so my next calibration reminder is beeping me at 6:30 am when I get up or later in the morning. I also don't get any alarms except highs and lows in the night.

My calibration snooze is 30 minutes. My remionder is one hour before.

Jamie said...

So glad to hear there are others out there frustrated with the Minimed CGM! Wendy about your comment of inserting the sensor before bed and waiting until the morning to "Start New Sensor," my pump does not give the option to calibarate it right away. It stills asks me to wait 2 hours. Do you know how I can change that or how you got it to work the way you did? Also I constantly am getting "Sensor Error" when I am trying to get a new sensor calibarated, any tips?
Thanks,
Jamie

Wendy said...

Hmmm! If I put the sensor in and attach the transmitter at night and then "Start New Sensor" in the morning, it ends up beeping at me within minutes every time. You are putting on the sensor and hooking up the transmitter, right?

collink said...

I found this comment by Wendy extremely useful - as well as my doctor resetting the alarm interval. If it tells beeps to tell me my bg is low or high, now it is set to beep again for another 4 hours. It assumes that when I cleared it that I did something to correct it. It is heaven to get 4 hours uninterrupted by an alarm!