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Thursday, November 14, 2024

Great at medical marvels; at communicating, not so much.



     As a professional communicator, I find this whole diabetes odyssey an essay in confusion and uncertainty.
     Start with the written material, that seems gauged at persuading morbidly obese persons who have no intention of altering their lifestyle to do something. Readers trying to find relevant information are constantly warned of all sorts of dire outcomes — you can go blind, lose your feet, lose feeling in your fingers, etc. — without ever being told the key, "...if you ignore this for years and years" part. I get the utility of scaring those reluctant to change their habits; but what about reassuring those of us already scared and doing all we can?  Would that not have value? It sure would for me,  at least at the start, before I finally pressed doctors who admitted, almost as an afterthought, yeah, that probably won't happen if you toe the line.
     The technology, on the other hand, is flawless, first rate. Every time I use one of those insulin injector pens, I want to write a mash note to whoever designed it. A masterpiece of functionality. Even at 6 a.m., before coffee, half asleep, the process is over in seconds. It's quicker and easier than flossing, and almost impossible to mess up. You don't feel the needle go in — another detail you're never told in books or brochures.
     I'm keeping track of my blood sugar via a marvel of technology known as a Dexcom G7 — a quarter sized monitor that sticks on the back of my arm, sharing my glucose levels not only with your cell phone, but with various doctors. If my levels dip in the night, my phone pokes me with with a "hey, wake up" chirp. Dexcom is a California company, founded in 1999, doing a cool $3.6 billion in the sensor trade last year.
     Good for them. The device is a wonder. But when I read the Dexcom materials, nowhere I noticed did they say that, when attaching the device, blood might start trickling down your arm. But it did last week. Oh look at that. With my left arm bleeding, quite a bit, I used my right hand to plug "bleeding Dexcom G7" into Dr. Google, where Dexcom informed me it "can occur if the needle pierces a blood vessel."
     Yeah, I got that, I thought, phoning tech support, but what do I do about it? Dial this number. Quickly I reached an actual human being, who instructed me to take off the G7 and throw it away. So I did, then reapplied a new G7 without puncturing any blood vessels, the tech rep staying on the line. 
      Immediately, though, there was a question — my prescription gives me three G7s a month. Each lasts 10 days. By throwing this one away at the start of its shift, I'll be one G7 short, and so will have to fly blind. For ten days. Not a good idea. The company materials say it'll sometimes send replacement devices. Would Dexcom, I wondered, send me a replacement for the one now in the trash? Seeing as how I applied it properly, and was following their advice in pitching it. Left to my own devices, I might have just kept it in place and hoped the bleeding stopped.
     The person on the phone said a lot of scripted gobbledygook that boiled down to: probably. They'll likely send one. A decision would be made by persons unnamed and I would get an email confirming the matter. When? Soon. I tried to get a hint: in situations such as this, do they end up sending one? Cause I kinda need it. Answer: most likely, you'll find out.
    Except I didn't find out. Twenty-four hours later, with no email, I figured, if it doesn't come in a day, it's never coming, and called again. Oh, sometimes it can take 48 hours to send the email the person on the phone said. That's fine, I blustered, I am patience incarnate.
     The next day I did indeed get an email from Dexcom. Here it is:
Hello,
Thank you for contacting Dexcom Technical Support regarding bleeding on 2024-11-07.
Please visit the Dexcom Help Center, FAQ section, at www.dexcom.com/faqs where most common questions have been answered.
Thank you again for contacting Dexcom Technical Support.
Sincerely,
Dexcom Global Technical Support
     Notice anything missing? Of course the FAQ section offered nothing relevant to my concerns. Nor did the email give the information it was supposed to provide. That is, whether or not they're sending another G7 unit. The not knowing part was more stressful than the bleeding part, in that it lasted far longer and there was no bright red blood to occupy my attention.
     As it happened, I told this story Tuesday to my diabetician — a sort of diabetes doula who acts as a stopgap for the woeful shortage of endocrinologists. He cheerfully offered me a spare G7 from his store of freebies, which I indeed appreciated, more than the information he provided, all of which I knew by heart a month ago. I asked him: should God forbid this happen again, and the prescription can't somehow be finessed, and I have to buy one, what do they cost? He said he believes the G7 system runs $400 a month. Or $133 for a wafer sensor and shaving cream can-sized applicator that can't cost $1.33 to make. Ouch.
     But at least I had enough units for now. One of the more daunting aspects of diabetes is the never-goes-away part, which is something to think about, endlessly, between the uncertainty of a nation entering the night of fascism in general and parlous employment in professional journalism in specific. 
     Which is why I smiled with surprise when, on Wednesday, a small box showed up. We've been getting tons of wedding presents — safer than the newlyweds' place in the city — so I figured it had to be a gift for the honeymooners. But I checked the address. The package was for me. What could it be? I genuinely couldn't imagine.
     Dexcom sent the G7 device, which is good. What is bad is they couldn't communicate they were sending it. Not a whisper. That's strange right? We live in a society clever enough to create this marvel of sensor technology that's tiny, doesn't hurt going on and clings to the back of your arm like a barnacle for 10 days. Sensitive enough to tell if your blood sugar is sinking low and wake you up, while keeping your doctors apprised of what's going on. But yet, a system not nimble enough to answer the question: is the gizmo coming or not? Maybe I expect too much.


14 comments:

  1. Infuriating. The healthcare system is totally devoid of the "care" part. The bureaucracy is worse than in "Brazil", the movie.
    I've seen service dogs that can alert people to extreme blood sugar levels, maybe Kitty can take on that job in case you need to go without the device again. She'd do it with love, care, and far better communication.

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    1. On tick tock there is video of Hank the Service Dog. This woman rescued the dog and taught him how to recognize when her blood sugar is low. I imagine it costs some good money to teach a dog this. Hank is truly amazing. I have no idea if this woman ever had a dog before, but he is one smart pooch.

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  2. While it can be aggravating to have the situation like NS describes in today's post, before people like Mark above condemn the entire health system, ("totally devoid of care") lets take a collective breath. Right now a very close family member is undergoing cancer treatment in one of Chicago's world renowned hospitals and the care there has been exemplary. I've had surgeries over the last ten years where I could not have been treated better. My personal doctor is responsive to my questions and his staff is also helpful. My prescriptions are delivered on time and care is taken regarding one drug affecting the other. Plus my wife was a nurse for 46 years and I know that she was not "completely devoid" of caring about her patients. I am certain that NS does not ascribe to the idea that no one in the medical community cares about him, but to have others diminish the efforts of an entire industry is uncalled for.

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    1. I'll take the point that "totally devoid" was a bit of an emotional overreaction. It's based on many years and cases of personal experience.
      I would say that your experience is less typical than most. This Time magazine survey shows 70% of Americans are dissatisfied with the system for many reasons that I don't need to re-list
      https://time.com/6279937/us-health-care-system-attitudes/?form=MG0AV3

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  3. When you factor in all the problems our healthcare and insurance system creates, suddenly the warnings don't seem so dire or outlandish.

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  4. Dexcom now sells an over-the-counter version, the Stelo (https://www.stelo.com/). $90 for two 15-day sensors. It's for non-insulin diabetics and non-/pre-diabetics. The range is less more limited than the G7 at only 70-240mg/dL. It's unclear whether it fires alarms when you go low overnight; otherwise, it may be a suitable stop gap for you.

    BTW I don't have one - I just ordered one as a backup for a diabetic family member in my care, an Abbott Freestyle Libre 3 user who's down to their last sensor. There’s a widespread Libre 3 sensor shortage now, and the only local pharmacist who would venture a guess gave December as when they'll be back in stock.

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  5. No, you don't expect too much. I'm glad Marty G.'s family member is getting such great care, but his experience isn't what usually happens to me, or anyone I know. The health care system leaves a huge amount to be desired in customer service, even as I'm sure it leaves much to be desired for its employees. Most people have their own health care or hospital stay horror stays so no point going on about it, but emphatically NO, you do not expect too much. At least your experiences will be of immense value to the many others navigating diabetes.

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  6. May I ask why you didn't publish this in the Sun Times? Maybe the publicity would have nudged the company to improve their communication? I don't know why but sometimes a company or government has to be pushed in doing the right thing. You weren't asking or demanding a freebie you were simply pointing out they failed to tell whether you were getting a new one. Perhaps the nuance would have been lost to whomever would have responded?
    Matt W

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    1. Because today is Thursday and I don't have a column in the Sun-Times on Thursdays. Plus I've already written three diabetes columns in the paper meaning, short of a spontaneous cure after a visit to Lourdes, I'm not writing about this in the paper for at least six months. Here, where EGD demands fodder, even on the semi-trivial scale of today's, is another matter entirely.

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  7. I've been using Dexcom for some years now. On occasion when the sensors have failed, they've been very responsive to an online complaint submitted through their app. Go to Profile, Contact and fill out the form. I usually keep the box for a few days so I'll have the serial number for the sensor. They usually respond quickly and send out a replacement sensor. Good luck!

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  8. Ordering a replacement dexcom sensor seems (to me) to be less about direct patient care and more about bureaucracy. And I agree that health care is caught up in much unnecessary bureaucracy!

    I started using the Dexcom Stelo sensor in early Sept - I had to wait for CGMs to become available without a Rx. I pay cash because insurance won't cover CGMs for non-diabetics, although I believe it would help a great number of people. The data I've received from the CGM has been more informative/helpful than available nutritional guidance. For years, I was unable to lower an A1C of 5.8 despite significant dietary modifications, changes to exercise routines, etc.. I now know that foods I thought were "low glycemic" still cause glucose spikes. The variety of apples I like have more sugar in them, for example, and if I want to eat an apple that wont cause a glucose spike, it has to be a Granny Smith or Braeburn apple. No honeycrisp!
    Last week was particularly educational.... my baseline glucose was higher than usual and I wasn't sure what had changed. Then, on Wednesday, I was crying through Kamala Harris's concession speech in mid-afternoon. I hadn't eaten in 3 hours, yet my phone alerted me to a glucose spike toward the end of her speech. Ah! The impact of stress!

    One drawback to wearing the device for me is a skin sensitivity to the adhesive patch. I purchased a diabetic sensor "arm band" to wear instead, which has been working better for me.

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  9. Jill, Metformin might help-it can be used for prediabetes

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