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Posts from the ‘Dexcom’ Category

Hypo Unawareness.

There are times when I think that maybe my hypoglycemia unawareness is made up, or all in my mind, or that it’s overblown and exaggerated.  “Pfffft, you can go without a Dexcom for a few hours, because you’ll totally feel any lows that crop up,” is the mantra that runs through my head when I pull a sensor off and see scaly skin, knowing I should wait before even going near the skin with another sensor.  (The Dexcom adhesive/sensor rash isn’t entirely better, but mostly better. The Toughpad underneath the sensor holds it for at least seven days, and more often than not, I’m able to go approximately ten days per sensor.)

But the thing is, I shouldn’t let things go that long.  I should be pulling the sensors at the seven day mark, to avoid mangling my skin and forcing myself into brief CGM hiatuses.

I tend to wear my sensors in the same region of my body (outer thigh), where there is enough real estate to work with, but not enough to work with exclusively.  The time between sensor reapplications, whether it’s a week or more, isn’t enough time for my skin to fully heal.  Sometimes a skin reaction doesn’t occur and the skin that was trapped underneath the Toughpad for a week is still unmarked and supple, so I can stick another sensor in whenever I’m ready.  Usually, regardless of how the skin looks when I pull off a sensor, I rotate to the other thigh and try to pick a different insertion spot, just to keep things on the up and up.  And sometimes, even when the skin looks good after I pull a site, it sometimes turns red, prickly, bumpy, and scaly a day or two afterwards, and remains scaly for several days.  (I apply this Curel lotion to my scaly skin and it helps quite a bit.)


I have trouble – lots of it – pulling a sensor off simply because it’s hit the seven day mark.  If that sensor is stuck, and the results are good, I want to leave it on as long as possible.  I feel like the longer a sensor is on, the more accurate and precise it becomes.  Days 8, 9, and 10 are always spot-on and I feel confident in the results because they not only match up with my meter for spot-checks, but they consistently match up.  Seeing more than a 15 point spread between my Dexcom number and my blood sugar meter check is a rarity in those date ranges.

Frustrating, to say the least, to pull of a sensor that seems to be working just effing fine, thank you very much.

I need to take better care of my sites, because for every long sensor shelf (leg?) life, I’m paying for it on the other side with scaly, un-useable skin.  Which equals out to needing to let the sites breathe for even 18 hours or so every few weeks.

Which ends up resulting in moments like this today:  Sitting in the parking lot at the bank, chewing and swallowing glucose tabs as fast as I can because the blood sugar of 41 mg/dL came out of no where and the only reason I even tested my blood sugar before driving home was because Birdy asked me if she could have a snack and I wanted to have a snack, too.  I had no idea my blood sugar was tanking.  Even in retrospect, the only symptom I had was a clumsy fumble for my meter in my purse, but I initially blamed the fumbles on cold hands.

I chomped the hell out of those glucose tabs – not out of shaky, panicky hypoglycemic symptoms, but the lack thereof.

 

Guest Post: Crusading for CGM Coverage.

I’ve used a Dexcom continuous glucose monitor (from the 3-day STS system to the G4 Platinum) since 2006, and the positive influence it has had on my diabetes management and overall quality of life is undeniable.  But as it stands now, when I reach the Medicare age, my coverage for CGM use will be denied.  Susan Berger, an advocate and caregiver for her husband (who has diabetes), is working to change that fact.  Today, Susan is guest posting about why CGM coverage is important, and how we, as a community, can help ensure that coverage.

*   *   *

Marc and I were high school sweethearts.  He was a year ahead of me.  When he graduated, he did a four year stint in the Air Force, 18 months of which were spent overseas in Okinawa.  Two months after he was discharged, we were married.  We lived in California for five years and this is where our daughter was born.   We returned back home to the east coast – Philly to be exact, where we lived for one year before moving to Harrisburg, PA and opening up a Hobby and Craft Shop.  We operated that business for 19 years, working side-by-side daily.  We also had a son during this period.  In 1996 we decided to go in a new direction and opened an Italian Ice and Ice Cream Shop, once again working side-by-side.  It was just a few months after we opened this business that Marc was diagnosed with type 1 diabetes.  What an irony to be in a business where you’re surrounded every single day with sweet ices, creamy ice cream and all types of toppings needed to make sundaes, shakes, etc., and being a diabetic.

His diabetes has impacted us in so many ways, probably too numerous to mention in one blog post.  Before he was fortunate enough to have a continuous glucose monitor (CGM), there were many times when his sugar would plunge downward so rapidly that I would either have to rush to get some juice into him if he was still conscious, or if I couldn’t catch it in time, use the glucagon to revive him.  Once he got a CGM (paid for by private insurance) I would describe our life as becoming pretty normal, practically back to prediabetes.  Much of the worry dissipated because we knew that the warning would go off he his blood sugar dipped too low.  When the CGM stopped working, and Medicare disallowed payment for a new one, life became extremely difficult once again.  We were back to all the fear and worry.

Marc has had some pretty close calls and it’s only either by luck …  or God watching over him that he hasn’t caused harm to either himself or anyone else.  There have been two incidences where he became completely disoriented while driving.  Both times he had been stopped by the police and fortunately for Marc, who makes his living by doing quite a bit of driving, his license wasn’t taken away.  When they realized he was diabetic, EMS was called to revive him and once he became cognizant, he was sent on his way.  Then there have been those times when I’ve had to revive him in the middle of the night.  I have used the glucagon many times over the past 15 years but my hands still shake when I have to give Marc a shot.


Our children live in Atlanta and I used to be able to visit them on a fairly regular basis, but now, I never leave Marc alone at night.  If he can’t go, then I can’t go.  I missed a wedding in Los Angeles because he couldn’t take the time off.  And I can’t have weekend get-a-ways with the girls because of the fear of leaving him alone at night.

Medicare guidelines do not provide for coverage of Continuous Glucose Monitors. I am an advocate for my husband who desperately needs a new CGM and previously received CGM coverage under private insurance before reaching age 65. I am a crusader for the entire diabetes community, whether you are on Medicare, will soon be on Medicare, have a Continuous Glucose Monitor presently, or might need one in the future. In December 2013 Representative Carol Shea-Porter [D-NH1] introduced a bill into Congress, H.R. 3710: Medicare CGM Coverage Act, which provides for coverage of Continuous Glucose Monitoring Systems by Medicare if recommended by a doctor. My recent post Baby Steps talked about the bill and many members of the Diabetes Online Community (DOC) asked how they could become involved in this crusade. I have just received an email from Congresswoman Shea-Porter’s Legislative Assistant, Marjorie Connolly, and she suggested the following:

  • The most effective step you can take is to ask your own Representative to cosponsor the bill.
  • Call your Congressperson’s DC office and ask for the email address of your Congressperson’s Legislative Assistant for health issues.
  • Email the Legislative Assistant the text of Shea-Porter’s Dear Colleague letter (link) along with a personal note. That way they will understand why the issue is important to you, the constituent, and they will also have the Dear Colleague to show their boss so that he/she will know how to sign on. The roster of the House of Representatives along with phone numbers is available here.

There are many diabetics such as my husband who never realized that when they went on Medicare, their CGM would no longer be covered. When the denial for coverage comes, and it inevitably will because Medicare considers the CGM a precautionary device, the arduous journey through the Appeals system is daunting, exhausting and psychologically taxing. The wait for a decision is beyond description and we have waited for 8 months. The entire process will only get harder as baby boomers become Medicare-age in greater numbers. We need to do something about this sooner rather than later. The only way to fight Medicare’s denial of the CGM is to get the guideline changed.

The best thing that we can do now is to let our voices be heard and join with Congresswoman Shea-Porter and her new cosponsor, Congressman Matthew Cartwright [D-PA17] in asking Congress to pass H.R. 3710, the Medicare CGM Coverage Act of 2014. Here is the Sample Letter and a copy of Shea-Porter’s Dear Colleague email blast. Don’t delay because the sponsors of this bill have begun their full-on push for support and every voice is important. If you are a fellow advocate and want to know how to help, click to download this document.

Please leave a comment on this post or email me [email in the advocate letter] if I can assist you in any way. You don’t have to be a person with diabetes to write the letter. You can be the son, daughter, mother, father, friend or as myself, the spouse of a diabetic. Please do this for all of those who so desperately need a CGM and can’t afford to pay for it out of pocket.

I love my husband and want him to be around for along time.  This is the reason why I became an advocate.  But just as important, in the time that I have been blogging, I have met many men and women who like Marc need a CGM and can’t afford to pay for the device and the sensors out of pocket.  And I have also been contacted by many who are worried that when their time comes to go into the Medicare system, they will experience what we are experiencing now.  I know that together we can make sure that Congress hears our voices and supports H.R. 3710.

*   *   *

Thank you, Sue, for speaking up on behalf of PWD.  (And for more on this issue, check out Kim’s post at Texting My Pancreas, and look through these discussions on TuDiabetes about CGM and Medicare coverage and on the ADA website.)

If I Knew Then: Continuous Glucose Monitoring – Dexcom.

I tried my first CGM system back in 2006 (this post outlines the very first awkward sensor application) and have spent the last seven years or so being thankful that this technology exists.  If I knew then what I know now … actually, I started on a CGM as quickly as I could, and stayed on it.  Why I wanted a CGM is an easy question to answer, but there are a few things I wish I had known before starting out:

I wish I had known that some of the sensors would hurt.  So many diabetes devices are branded with “pain-free!” and “barely feel it!” advertising taglines, which I think is crap.  We’re talking about a needle that pierces your skin and leaves a wire behind, underneath your skin, for a week at a time.  To think that every sensor will glide under your skin with barely a whisper is bullshit.  Some of the sensors hurt like hell when they go through my skin, and sometimes it takes an hour, or a day, for the site to settle down and not feel so tender.  But most often, it is a reasonably quick pinch and then reasonably painless for the duration of the wear.  Your mileage may vary with each and every sensor.

I wish I had known the data would be addictive at first.  The first time I wore a Dexcom sensor, it was back in 2006 and was one of the first marketed versions of the system.  But I was hooked on the data.  I looked at the receiver every five minutes and went bonkers trying to make sense of the trends.  The trouble was that the readings were far less accurate back on the Dexcom STS, but I took them as seriously as the numbers on my glucose meter.  For the first few weeks of wearing the Dexcom, I drowned in data, obsessively checking it and chasing slight blood sugar climbs with aggressive correction boluses.  I needed to learn to let the data flow into my management, not change the flow of my management.

I wish I had known I would go through a data burnout – and that’s okay.  After I gave birth to my daughter, I went through some post-pregnancy burnout (adjusting to motherhood put my diabetes on the back burner for a few months) and for several weeks, the Dexcom was used to monitor my overnights (watching for lows), but not much else.  I wasn’t in a mental state to micro-manage my numbers, and instead I needed the Dexcom graph to confirm that I was at a stable enough blood sugar to take care of my kid.  The data was too much at times, and I frequently turned off the high alarm because it BEEP!ed relentlessly.

I wish I had known that thresholds were individual choices.  Everyone manages their diabetes in a different way, and even one, single person can have varying styles and preferences.  For a few years, I wanted to see my blood sugars between 60 – 220 mg/dL.  When I needed/wanted tighter management (pre-pregnancy and pregnancy), my thresholds were between  60 – 140 mg/dL.  And now, I keep my high alarm set at 140 mg/dL.  I like knowing when my blood sugars go over 140 mg/dL because that gives me a chance to head them off at the pass and keep them from climbing into the 180′s and 200′s.  Some people roll their eyes at wide thresholds, while others judge for not having the lines “tight enough.”  Where you set your CGM alarms is a personal decision and one that needs to work for you and your medical team.

I wish I had known, and had been ready to accept, the fact that wearing a second device was going to be a pain in the ass.  I wear my sensor on my outer thigh and the bulge is pretty obvious at times.  When I go running, you can clearly see the outline of the sensor through my running pants (and you can almost read the word “Dexcom” through running tights).  In a more fitted dress, the lump on my thigh is unmistakable.  And sometimes if the sensor is a tough too high or too low, it’s right underneath where the pocket of my jeans sits, making it feel particularly lumpy and awkward.  Of course, there are plenty of times when it’s barely noticeable, if at all.  (And it’s always fun, and a bit cheeky, to talk about “the bulge in my pants.”)

I wish I had known that I would eventually learn to trust the algorithm.  At first, I had to learn how to use my CGM, and I had to let the transmitter “learn” me.  The numbers I saw, when compared to my meter back in 2006, weren’t close, but I needed to understand that the CGM provides trends, not exact blood sugar results.  (The thing doesn’t even test blood sugar, but instead interstitial fluid.  Knowing that, however, still doesn’t make me want to throw all technologies across the room when the meter and the CGM are 100 points apart.)  And even now, using the most recent iteration of the Dexcom system (the G4 Platinum), the results are almost spot-on with my meter, but I need to remind myself to test my blood sugar to confirm how accurate the CGM is now.

I wish I had known that there could be an allergic reaction to the Dexcom sensors, but that it could be managed with someone as simple as a high-tech bandaid.  After spending months dealing with a very volatile rash caused by my skin reacting to the Dexcom sensor adhesive, a reader suggested that I use a Johnson & Johnson Toughpad underneath my sensor.  This simple solution worked to cure my Dexcom rash.

I wish I had known that the information I (hunt and) gather from my Dexcom data has made my diabetes easier to wrangle in.  Sure, the thing alarms all the time and yes, wearing a device isn’t ideal.  But when it wakes me up in the middle of the night because my blood sugar has dipped below 60 mg/dL, or when I can check it before driving and see, with confidence, that my blood sugars are stable before getting behind the wheel?  For me, that makes any and all of the inconveniences worth it.

What did you wish you had known, before trying out a CGM?

Photo-A-Day: Check.

Today’s Diabetes Month Photo-A-Day prompt is “check.”  And seeing how different my Dexcom result is from my meter proves why it’s still important for me to check my blood sugar instead of relying on the information from my CGM.  (Also, you can’t see the “blood drop” request for calibration because the overhead light flushed it out, but this Dexcom sensor was four hours overdue for a meter check.)

Diabetes is a science experiment, with imperfect tools, an imperfect host, and a busted up pancreas.  But we keep rockin’.

Hypoglycemic Blues.

This past weekend, I was in Omaha (pronounced in my head as “OMAHA!!!!” almost every time), Nebraska for a TCOYD conference, joining in as speaker for the event.

One of the topics in OMAHA!!!! that we talked about was the integration of medical devices, sharing anecdotal stories about life with out diabetes-related robot parts.  Panel moderator Dr. Jeremy Pettus shared a video he made about how using a continuous glucose monitor, illustrating the difference between catching a low when you’re deep in the trenches of it (whoa, 49 mg/dL) versus catching it when it first starts (like 8o mg/dL and dropping).

The ways a CGM has helped improve my quality of life are becoming hard to count:  I feel safer when I drive, when I sleep, when I was pregnant, when I am traveling, when I eat new and strangely-carb’ed up meals … and now I’m more appreciative of how it helps keep me from over-treating those frigging overnight lows.

Thanks, Jeremy, for taking the time to explain this CGM benefit while sporting your pajamas.  Bold move, doctor!

Flight Risk.

I’m not a fan of traveling by air (major understatement) and my flight-related anxiety has ebbed and flowed over the last few years.  Actually, it’s been way more flow than ebb, because traveling by plane has a direct and predictable influence on my blood sugars, in that the anxiety of air travel causes my blood sugar to rise with the plane.

What amazes me is that even with a 200% basal increase and a conservative correction while I watched the double-up arrows on my Dexcom graph, my blood sugars still went berserk.  (Thankfully, the Dexcom showed me up in the 300′s, while my meter only had me in the 230′s.  But still.  And yes, I know I need to calibrate.  You can also see where my connection flight took off, riiiiiight there at the 3.30 am-ish mark.)

Even though I know emotions are on the long list of variables, it still amazes me how something as intangible as stress can be as powerful as food or insulin when it comes to tangling up my blood sugars.

Short Dexcom Break.

It’s not just a matter of slapping on a new sensor, queuing it up, and making use of the data once it’s available on the graph.  Wearing a Dexcom sensor has now become this intricate pseudo-science of site rotation, skin maintenance, and scheduling, thanks to the dreaded Dexcom rash.

My first skin irritation from the Dexcom sensor popped up in August 2012.  It seemed that, overnight, my skin bloomed into this gross, oozing rash underneath the sensor adhesive, making me pull the sensor off after barely 24 hours due to excessive itch and irritation.  At first, I left sensors on too long, coaxing a bright red, blistering rash out on my skin.  It was nasty.  It looked like a chemical burn, and it itched like a son-of-a-bitch.  (How literal is that expression?  Also, there’s a whole Wiki entry on the word “bitch” and it’s fascinating.)

Now, over a year later, keeping the Dexcom as part of my life means bringing in some extra bits and pieces, things like a steroid inhaler, adhesive tape, and wound patches to act as skin barriers.  90% of the time, these strategies work great and I’m able to earn the FDA-approved seven days out of each sensor, without compromising accuracy or comfort.  Usually, one sensor is pulled and I put a new one on immediately, leaving me data-free for only the two hour calibration period.  Seven day seems to be enough time for one site to heal while I use another one, so the rotation from thigh-to-thigh works really well.

But 10% of the time, I need to take a break for a few days in order to let my skin heal.

I’m currently in that 10% moment, and it sort of sucks, because I miss that data security, big time.

After pulling my sensor off on Monday morning, I noticed that my skin was redder than usual, and a little puffy from reaction to the adhesive.  It itched like mad, and looked angry.  I’m traveling for work next week, so I want to make sure the sensor I have on as I’m switching time zones and taking red-eye flights is good to go.  I decided to give my skin a two or three day break, planning to stick the new sensor on Thursday morning so it would be in awesome-mode by the weekend.

I’ve been wearing the Dexcom every single day (with few exceptions) since I was pregnant, and being without the CGM data is a hard adjustment.  Before bed is particularly tricky, because I rely on the IOB on my pump and the direction of my CGM graph to dictate whether or not I set an alarm for 3 am to check my blood sugar.

Last night:  My blood sugar was 182 mg/dL before bed at midnight.  I had eaten a late meal (10.15 pm), so there was some insulin on board from that bolus.  I had gone to the gym to run around 7 pm, so there was residual exercise in the mix, too.  Normally, I’d pop my low alarm up to 70 mg/dL on the Dexcom and stick it in a glass overnight, but without the CGM to help guide me, I set the alarm for 3.30 am.

(In)Conveniently, Birdy woke up at 2 am, so I tested then (150 mg/dL).  I took a correction bolus and checked again at 3.30 am (110 mg/dL), and woke up this morning at 104 mg/dL.

Even though it worked out fine, blood sugar-wise, it was the insecurity of not having access to streaming blood sugar data that made me twitch.  The sensor is bulky and the receiver is easy to forget, at times, but the inconvenience of robot parts is outweighed by the information I get from a CGM.

… which makes me look forward to Thursday’s sensor reboot almost as much as I’m looking forward to Sunday’s second-to-last Breaking Bad.  :)

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