LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016

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Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Sunday, April 13, 2014

Rudderless in the current

My iPod alarm goes off, playing the funky Xylophone beat that greets me every morning. Of course, it’s not morning. In point of fact, it’s three in the afternoon.

Has another hour past? I guess so. I silence the alarm with the swipe of my thumb. It’s time to test my blood sugar. Again.

I’m testing my blood sugar on the hour, every hour, during the day; and every two hours all night long. Have I lost my mind? No. I’ve lost my CGM and now I’m doing my best not to lose my life as well.

Since my CGM went offline not quite two days ago, I’ve done 34 fingersticks. By the time I get this written, edited, and posted, the teststrip body count will be higher. Do my fingers ache? Sure, but not as much as my heart does. Of course, this won’t be forever. This is emergency medicine. My salvation is coming in a FedEx truck, but it’s not coming from Dexcom, it’s coming from the kindness of a fellow patient. Is Dexcom sending anything to help? Oh, yes. More about that later, but their idea of help is perverted, to say the least.

I’m sure a lot of folks who read this will think I’m over-reacting, or being paranoid. I think not. There are some facts to consider. First, I’m as brittle as hell. My diabetes has temper tantrums that make the world’s most spoiled brat look well behaved. Despite what I think to be a better-than average understanding of all things diabetes, my quest for control is a struggle—to say the least. Mystery spikes plague me. The smallest of doses of insulin sometimes trigger epic crashes. And to top it off I don’t feel my lows. At all. I have total hypo unawareness and thus, total CGM dependence. Without this gear, it is unlikely I would be alive today to write this.

As many of you know, I was the 30th person in the USA to get CGM, and I’ve had it virtually uninterrupted since that time. Over the years I’ve become increasingly dependent on it, and have built my treatment routine around it. Brittle folks like me have unexpected responses to identical stimuli. What works one day doesn’t work the next. One day a given correction for, say a blood sugar of 250, will drive me low. The next day it has no effect at all. On a third day that same insulin acts like sugar-water and my BGL soars upwards.

I’ve learned that no amount of prior planning can help me, but that I can live in the moment with near-continuous constant adjustments. As I drift up, I layer on the insulin. As I drift downwards I slowly increase the carbs. My control is never perfect this way, but it rarely suffers extremes, either.

So for me CGM isn’t so much about continuous monitoring as it is about continuous therapy.

But without CGM, my ship is completely rudderless. Not only can’t I control my blood sugar, but because I am 100% hypo unaware, without the CGM I no longer feel safe. You can’t test often enough to detect a sudden drop you are incapable of feeling. Driving could kill me, or worse, kill someone else. Hell, sitting in my living room watching TV could kill me, too. Frightening is not a strong enough word. Terrifying is not a strong enough word. We don’t have a word strong enough. It is a flavor of fear like a dull ache that never diminishes.

I’m too damn tired from lack of sleep to take you through the whole infuriating story; let’s just say that I’m the victim of a combination of corporate greed and corporate incompetence. I did everything right, but still got screwed, and what makes me maddest is the fact that every frickin’ time I’ve talked to Dexcom they tell me a different story. They have the best product, so I guess they feel they don’t need good service. I disagree. I say they have an obligation that borders on holy. I don’t begrudge them their profits, but I sure as hell begrudge them their carless attitude with our lives.

 And they just don’t get it, any of it. On my last call to Dexcom—in the middle of the night on Friday—the tech support people were powerless to help me with the transmitter. They advised me that customer service people, apparently the only ones who “might” be able to send me a loaner transmitter to make up for their paperwork mistakes that are delaying an insurance-covered replacement, work on Saturday mornings, and to call back then. (It turns out the customer service side don’t work Saturday. I had to leave them a nasty voice mail telling them to up-the-fuck-date their website and let the people on the other end of the building know what their working hours really are). Oh, but meanwhile the tech folks will be happy to replace the sensor I was wearing when the transmitter died. They are sending it overnight by FedEx.

A sensor without a transmitter is about as useful as film without a camera, a battery without a flashlight, ink without a quill.

To me, a sensor without a transmitter is insulin without a syringe.


Blogger Unknown said...

Hi Wil, I am so very sorry to hear about all this. It seems ridiculous, and is putting your life in danger. I wanted to know if you need sensors. I have some extra and I would love to send them to you if you need them. If you do, leave me a comment back here and I will get in touch with you how to get them to you.

5:13 PM  
Blogger Wil said...

Thanx much, Penny, but (knock on wood) I'm OK on sensors right now.

5:51 PM  
Blogger Bernard said...

Wil, my receiver died a few months ago. Despite offering to give Dexcom a credit card so I could get one before the insurance dance was done, I still had to wait a week+. My control was lousy, my fingers sore and my temper short at the end of that week

Dexcom's customer service has slipped, no doubt about it.

10:52 AM  
Anonymous StephenS said...

Wil, I hope this gets resolved very soon, like yesterday. You're right: there's not a strong enough word for the lows, though "near-death experience" comes close. Good luck.

12:53 PM  
Blogger Penny said...

OK Wil, but if you need some, you just let me know.

6:53 PM  
Blogger Dougs ramblings said...

Kinda shocking that a CGMS evangelist like yourself cant get through the level one customer service BS ....

3:42 PM  
Blogger Dougs ramblings said...

Kinda shocking that a CGMS evangelist like yourself cant get through the level one customer service BS ....

3:42 PM  
Anonymous Allison said...

So sorry that you have to sacrifice your health due to someone else's screw up. I had a similar problem a couple of months ago when it was time to replace my transmitter. ...
The supply company said my insurance would only pay for one per year, even though they only last six months. So new forms had to be sent to my doctor, whose desk they sat on for a MONTH before he signed them. Then as it turns out, the insurance company didn't have any problem paying for the thing after all. I was without my CGM for two months while all this got sorted out. I can't imagine the havoc this will wreak on my next A1c results!
Good luck Will!

6:26 AM  
Anonymous Anonymous said...

Welcome to the beurocracy of the medical industry. Doesn't matter what the field, theres always got to be some sort of ridiculous dance that needs to be performed before anything happens that compromises the patient in some way.

12:21 PM  
Blogger Unknown said...

For CGM, it's surprising they use such a crap battery - wait, no it's not, profits come first. It would be better if it used something replaceable, but then again profits before all else.

3:02 PM  
Blogger Unknown said...

Something related to batteries not CGM... You can use lithium AA to replace a regular C battery. It's a smidge of a pain, but works when you need to rig something. Not that many things use C batteries anymore though, only thing I've seen in the past couple years are baby swings.

If I could afford CGM, I'd find a way to replace the battery, by hook or crook. But I do have an Uncle that is an engineer and has friends in China that can help.

3:07 PM  
Anonymous Mary Cegla said...

I realize I am a little behind on this post but it took me a while to remember where I read about a transmitter. Five days ago I got the LOW TRANSMITTER within 8 hours it was dead. Apparently a lot of people need to decide if I can have another one. So many people it could be up to 14 days!!! I have a love hate relationship with my CGM but it can be a scary world with out.

6:55 PM  

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