Outside the Box: Silencing Tandem Dexcom Alarms

Posted on November 29, 2022 by Laddie

If you’re like me, sometimes you want to silence all Dexcom alarms.

Maybe you’re at church, a wedding, or a funeral. Possibly a job interview or an important meeting. Maybe you just want to sleep. Maybe it is the first 24 hours of a sensor with erratic readings and nosediving lows.

All Dexcom alerts except for the 55-Low alarm can be turned off on both your phone and Tandem pump. But you can’t turn off the 55-Low critical alarm or even pause it for a certain period of time. Some people think that is a great safety feature and have no problems with the limitation. Me, I struggle with it. Although Dexcom is a great tool and I appreciate that it regularly gives me notifications of highs and lows, I don’t believe that it saves my life every day. I am confident that if I can silence all Dexcom alarms at certain times, I am going to be okay. Sometimes my diabetes mental health requires that. I don’t want my medical device to siren at my niece’s wedding or during an important business meeting. (Actually I am retired and don’t have important business meetings. But you know what I mean.)

In August I wrote about my frustrations with Day 1 Dexcom sensors. Many or most of my sensors start at a number much lower than my actual meter-confirmed BG. While it is easy to turn off Control IQ on my Tandem pump until the sensor is reliable, the stress of repeating false 55-Low alarms on both my phone and pump is sometimes unbearable. I want to STFU those alarms! Not forever. Just for a couple of hours until the sensor stabilizes. Here is a reminder photo from that August blogpost.

When I am losing the battle with Dexcom false low alarms, I can turn off my phone for a while or overnight if I am not expecting important phone calls. But the pump is different. I can’t turn it off or bury it in my sock drawer because I need insulin delivery. I can’t pause or completely silence the sensor on the pump without stopping the sensor session. I am stuck.

It recently dawned on me that there is a way to silence the 55-Low alarm on my pump until the sensor is stable and reading accurately. I recently purchased a small Faraday bag which magically prevents Bluetooth and other electronic signals from communicating with whatever device I put in the bag. The Faraday pouch allows me to keep my pump running without turning off the active sensor session. But it stops the transmitter from sending false low numbers to the pump and prevents the incessant low-55 alarms. (FYI you must turn off the Out-of-Range alarm for the period that the pump is in the Faraday bag or you’ll get that alarm. Options/My CGM/CGM Alerts/Out of Range.) If I am concerned that I might have a real low, I use my meter. For something short like a funeral, a real low is an unlikely occurrence as long as my BG starts at a good number. For a sensor startup, I’ll probably use my meter several times whether or not my pump is in a Faraday bag.

If you don’t know about Faraday bags, you can do an internet search and learn about how they work. People use this technology to protect key fobs, credit cards, phones, and other electronic devices from remote hacking. Scientists have lots of exotic uses for Faraday cages that block all electromagnetic interference. Me, I just want it to temporarily isolate my pump from inaccurate sensor readings.

If you’re someone who doesn’t struggle with Dexcom inaccurate numbers and isn’t bothered by alarms, a Faraday pouch is probably not for you. But if you are like me and sometimes just want to be protected from alarms that are inaccurate and/or intrusive, you might want to give a Faraday bag a try. There are lots of choices online and I purchased this one for about $20 through Amazon. I wasn’t convinced that the Extra-Small size would work (although I think it would), so I bought Small. It is big enough for my phone and definitely roomy for the pump.

When you remove your pump from the Faraday bag, initially it will show the Out of Range symbol. It takes 5 minutes or less for the pump to reconnect to the Dexcom transmitter.

Some people will appreciate the ideas in this blogpost. Others, especially parents of young children and people not diagnosed in the dark ages, will be askance at the idea of blocking Dexcom signals.

But me, sometimes I need my diabetes tech to leave me alone. I am not a total rebel and mostly I do a good job of managing my blood sugar and staying safe. But sometimes I am just an imperfect human trying to deal with imperfect D-tech and I need a way to protect my mental health. The Faraday bag is a new tool in my arsenal.

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Note: The Faraday bag is not a solution for the siren of Tandem occlusion alarms. Fortunately with my recent pumps, I am rarely getting those alarms anymore. But I have memories of shrieking (false) alarms in yoga class and at the movies. So far none at a wedding or funeral….

Medicare, Dexcom, and Test Strips 2022

Posted on July 10, 2022 by Laddie

It was a wonderful day when Dexcom G6 was approved without the requirement for daily calibrations. One less chore in my diabetes life and fewer alarms interrupting my day. But unfortunately for many of us seniors, the labeling of Dexcom as therapeutic and non-adjunctive** has made it more difficult to receive Medicare-reimbursed test strips or at least the test strips of our choice.

** Per CMS Policy Article A52464: “A therapeutic or non-adjunctive CGM can be used to make treatment decisions without the need for a stand-alone BGM to confirm testing results.”

Like everything with Medicare, people are having totally different experiences with the test strip problem. Some seniors on Advantage Plans are able to get test strips in addition to CGM with no problem. A few people on Facebook claim to get coverage for 3 strips a day (the Medicare allowance for insulin users) from their pharmacy because the doctor wrote the prescription saying that the strips were for calibrating their Dexcom. Others have had no success getting pharmacy coverage for strips regardless of what the prescription specifies. I have read many times our Medicare CGM suppliers are required to provide a meter and I recently got a meter and strips from Solara. But it was not the meter and strips of my choice.

I started this blogpost ten days ago writing that I could find no CMS document outlining the exact guidelines for test strip coverage. All of my info was from word-of-mouth on diabetes social media. Then a few days ago a Facebook friend posted a link to Glucose Monitor – Policy Article A52464C as updated on 4/7/22. Finally for better or worse a clear delineation of the policy.

Some of the History

When Dexcom began providing Dexcom G5 to Medicare recipients in 2017, we were shipped a blood glucose meter and test strips packaged with our monthly sensor allowance. What was amazing was that Dexcom picked a high quality meter system (Contour Next by Bayer) for Medicare recipients rather than the cheapest kid on the block. At that point Contour Next was rated as the most accurate meter by the Diabetes Technological Society (DTS).

Meanwhile some pharmacies quit providing test strips to seniors on CGM due to Medicare denying payment because we were getting test strips from Dexcom. Fast forward to Dexcom G6 when Dexcom quit being a Medicare distributor and moved us to Walgreens and online DME suppliers. All of a sudden many of us were no longer getting test strips. It wasn’t a big deal to me because I had lots of extra strips that I used well past their expiration dates. Only now have I run out of those strips and need to investigate my alternatives.

The Present–My Interpretation

Despite the different experiences of Medicare recipients in getting test strip coverage along with CGM coverage, Glucose Monitor – Policy Article A52464C clearly outlines the policy. (Please note that Advantage Plans are Medicare benefits administered by private companies and can have different rules than Medicare. Similarly people with TRICARE and retiree plans can have different benefits. I am writing about Basic Medicare with or without a Supplement Plan.)

As stated above, Dexcom is labeled as a therapeutic and non-adjunctive CGM. The test strip policy is:

“For non-adjunctive CGMs, the supply allowance (K0553) also includes a home BGM and related supplies (test strips, lancets, lancing device, calibration solution, and batteries), if necessary. Supplies or accessories billed separately will be denied as unbundling.”

So yes, you can get test strips under Medicare as part of your CGM supplies. The crucial part of this policy is the mention of supplies billed separately being denied because of being “unbundled.”

Bundled versus unbundled. Bundled is when my CGM DME supplier provides me with a meter and strips as part of my Dexcom sensor order. Those test strips are covered by Medicare. Unbundled is when I try to get test strips from my pharmacy. Those test strips will be denied. Unfortunately to carry this further, bundled is when my CGM supplier sends me a cheap meter of its choice. Unbundled and denied by Medicare are strips for my highly rated Contour Next meter.

I do not have the knowledge to address the policy for Medtronic CGM users. Those sensors are considered adjunctive and it looks to me that meters and strips are not part of their bundle. So I wonder if Medtronic users can still get test strips at the pharmacy??? “For adjunctive CGMs, the supply allowance (A4238) encompasses all items necessary for the use of the device and includes but is not limited to, CGM sensors and transmitters. Separate billing of CGM sensors and transmitters will be denied as unbundling.” I also do not have experience with Libre and Eversense systems.

My Choices and My Experience

I don’t use a lot of test strips compared to pre-CGM days. Most of my testing is on Day 1 of new sensors when I consistently have erratic results and lots of false lows. I would estimate that I use 7-10 strips per sensor and I’ll call that 25 strips per month.

One choice is to keep using Contour Next and pay out of pocket. That is not as horrible as it sounds because Walmart and Amazon sell Contour Next strips labeled Over-The-Counter for $26.58 for 70 strips ($0.38/strip). Walmart also sells an online bundle of 200 strips for $54.99 ($0.27/strip). If I use 25 strips/month and thus about 300/year, I can get by on $81-$114 annually. I can afford that but not all people can.

A second choice is to use the Omnis Health Embrace meter and strips provided by Solara, my DME supplier. The upside: this choice has no out-of-pocket cost. The downside: did I mention that it is a Talking Meter? Fortunately I have good eyesight and don’t need a talking meter. But if I turn off the talking which is quite obnoxious, I get loud beeps that are equally obnoxious. Two other negatives are that the meter must be turned on and off and the strips are difficult to insert. Plus this meter did not pass DTS’s benchmark tests.

A third choice is to buy a cheap ReliOn meter system from Walmart. In the original DTS study, there was a Walmart meter that was rated highly and passed the benchmark tests. Walmart ReliOn Confirm Micro. When I go to the Walmart website, I can find the ReliOn Confirm Micro BG test strips but I cannot find the meter. So it is obviously not in production. About two months ago I purchased a ReliOn Premier Compact meter that included 50 Premier test strips for $19.88. My first two concurrent tests were 100 and 130. For me the most important accuracy test for a BG meter is repeatability. Those two tests were too far apart for me to have confidence in the meter and strips. It is now my fountain pop tester.

A fourth choice is that I bought a CVS Advantage meter and strips that were highly rated in the DTS study. So far the results have seemed reasonable and the OOP costs for strips are less than for Contour Next. But not a lot less.

I could go forever trying other meters and strips and I am not sure that there would be a definitive or right answer.

Interestingly yesterday morning, I did a bunch of BG tests, each with a new fingerpick of blood. The noisy Embrace meter tested 102-102 on tests two minutes apart. Repeatability: Surprisingly great. Then I used the CVS meter and got 107-118. Not exactly the same but meanwhile my Dexcom went 109-116. And then the Contour Next was 80-82. Repeatability great, but the numbers were totally out of the ballpark from the other meters and my sensor.

Today I did similar tests. Embrace meter 114-115. CVS 114-112. Contour Next 106-105. Dexcom sensor 134.

So what does this mean and what should I do?

I have no idea.

All I know is that according to a common saying: “A man with a watch knows what time it is. A man with two watches is never sure.”

Along that line: A woman with one meter knows her blood glucose. A woman with a CGM and three meters doesn’t have a clue.

*******

TBD what I decide to do about test strips. I have a few months worth of Contour Next and CVS strips. I will continue to use the ReliOn strips for testing Diet Coke. But I am flummoxed that the Contour Next readings were significantly lower on the first tests than my Dexcom and the other meters and moderately lower on the second tests. And the free Embrace meter is being surprisingly consistent.

March Miscellany

Posted on March 1, 2019 by Laddie

It is a new month and time for opinionated comments and updates.

It Shouldn’t Be This Hard: Earlier this week I ordered my February Medicare bundle from Dexcom. I am also in the process of trying to get my 90-day insulin prescription under Medicare Part B. I’ll politely say with no curse words that none of this is going well. I am turning into the “Always-B*tching Blogger” because this stuff is so hard. And it shouldn’t be. I am just trying to do what I did last month and the month before with Dexcom and 3, 6, 9 months ago with Walgreens and insulin.

I will eventually get out of Dexcom “Processing” limbo and my supplies will be shipped. Some Medicare recipients have been told that shipments are delayed 7-10 days due to high volume. Long call waits, shipments delays, and moving Call Support to the Philippines have not made Dexcom a popular company in the diabetes online community. ‘Nuff said. And Walgreens will figure out how to get Medicare coverage for my insulin.

At the same time, I like the ring of Always-B*tching Blogger and you can just think of me as ABB!

The Weather: I have spent winters in Arizona for 15+ years and have never seen snow. That changed last week with 3 inches of the white stuff. Fortunately despite a few downed tree limbs, we had little damage.

Finally spring has arrived and the Arizona that I know and love is back.

Ground Squirrels: Although my landscape and flowers survived the snow, I am totally losing the battle with ground squirrels. These horrible creatures are “protected” in Arizona and my exterminator isn’t allowed to poison them. Plantskyd which deters rabbits and deer in Minnesota is impotent. My normally gorgeous March geraniums are decimated. This photo is one day after replanting and an ample dosing of Plantskyd.

The Dog: All of my readers are kind to read about my dog and her journey through aging and illness. I have come to terms with her limitations and the fact that we only walk half a block twice a day. Otherwise she is happy, eats well, drinks well, poops well, plays fetch with her Bouda giraffe, and wags her tail. Despite me being her caretaker, feeder, medicine dispenser, Bouda thrower, etc., she loves my husband the best and delegates me to #2. Like a teenager, she loves baking in the sun on our back patio.

Animas/Medtronic/Tandem: My Animas pump went out of warranty in late 2016, but I still get emails from Animas and Medtronic about switching to a Medtronic pump system. I am committed to Dexcom and see Tandem and maybe Omnipod as my future. Until Medtronic sensors are reimbursed by Medicare, there is no way that I will take a chance on a CGM that is out-of-pocket. At the same time I have struggled for 2+ years with occlusion alarms on my Tandem X2 and have been back using my Animas Vibe trouble-free for the last 3 months.

Kinda Whole 30: I have written about Whole 30 and my imperfection at succeeding through 30 days. But I periodically go back on the reset diet and am amazed at how fabulous my blood sugars react to no dairy and no grains. I eat a ton of fruit on this diet and get no spikes. Because I have hosted two dinner parties in the last week, I have once again have strayed from perfect adherence and have had wine. But here is a 24-hour Dexcom tracing that speaks for itself.

Thank-you. As always, I am grateful for my online diabetes contacts. Keep up the good fight, my friends, and keep in touch. Without you, my diabetes would be really, really hard instead of just really hard. Diabetes social media makes a difference.

Tandem Occlusion Alarms: An Engineering Experiment

Posted on July 26, 2018 by Laddie

I began using the Tandem t:slim X2 insulin pump in December 2016. Since then I don’t think that I have written a blogpost about the pump without mentioning false occlusion alarms. In my first review of the pump, I wrote:

“I have used the Tandem t:slim X2 for almost 10 weeks. In that time I have had 9 occlusion alarms resulting in an immediate stoppage of insulin delivery. The first couple of times I panicked at the shrieking pump alarm fearing that something was actually wrong. Nope. Not once has there been a problem that did not disappear by working my way through the menu screens and pressing “Resume Insulin.” The vast majority of these alarms have been while delivering meal boluses, but not all.”

Periodically I have thought that I have solved the problem and interestingly I have had completely different experiences with my three X2 pumps. Pump #1 got weekly occlusion alarms during the first four months of use. I eliminated the alarms by either using a case or wearing the pump on my waistband with a Nite Ize Clip. But I hated those solutions and eventually went back to carrying my case-less and clip-less pump in my pocket. For no discernible reason the occlusion problem didn’t reoccur and I only had two or three occlusion alarms in the next 11 months. In February 2018 Pump #1 was replaced due to a battery failure. I only used Pump #2 for a month due to a defective T-button. But in that time I did not have a single occlusion alarm.

Then I got Pump #3 and immediately returned to weekly occlusion alarms and sometimes two or three a week. I figured these alarms were the price of refusing to use a case or clip and I just lived with them. Then a couple of 2-alarm days convinced me that enough is enough. I dug the case out of my supply box. The pump became heavy and large with the case and would no longer would easily fit into the waistband pockets of my workout pants and pajamas. Total PITA. But I didn’t get occlusion alarms. Hating the case, I went back to the Nite Ize clip with the pump on my waistband. And ugh, I started getting occlusion alarms again.

So now my question became: Why does the case eliminate false occlusion alarms? A Tandem tech rep once told me that the case eliminated temperature fluctuations that occurred when I took the pump out of my pocket to enter a bolus. Seemed kind of far-fetched and if that was the case, why doesn’t everyone who carries the pump in their pocket get occlusion alarms? And when I was wearing the pump on my waistband with a clip, why did I get occlusion alarms because there was no temperature change?

My current hope is that the case works because the cut-out over the pump vent holes stops the vents from being blocked during insulin delivery. How could I replicate that without using a case? On Tuesday I went to the nearby Ace Hardware and wandered down the aisle with screws, washers, nuts, springs, etc. I bought a couple of gizmos including black plastic rings with a hole large enough to protect the 6 vent holes on the back of the pump. (It should be mentioned here that there are constant discussions on Facebook about the purpose of these tiny holes and some people swear that they are only for sound. A Tandem tech rep recently told me that the holes are dual-purpose and function both as vents and speaker holes. So that’s what I am choosing to believe.) I also bought 2-sided adhesive strips.

Working in my kitchen laboratory, I used a hole puncher to cut a perfect-sized hole in the adhesive and then used scissors for the outer circle. Carefully I attached the ring to the pump. Voila! (It wasn’t quite that simple so if my experiment is a success, I will share more detailed instructions.)

It will take a week or two to see if this MacGyver fix works. I started a new cartridge yesterday and I rarely get occlusion alarms until the cartridge measure 80-120 units. If I make it a week without an occlusion alarm, I will have to see what happens with my next cartridge. And then another.

Diabetes. A science experiment that sometimes requires engineering solutions.

7/26 Late Morning: Unfortunately my science experiment is already a FAILURE with an occlusion alarm during basal delivery this morning. I totally jinxed myself by publishing this blogpost. In defeat I have already taken off the black washer. I spent 45 minutes on the phone with Tandem and the pump passed all of the tests. Of course it would because the pump works fine most of the time. I even changed my cartridges every 3 days for the last week and a half and got 4 alarms within the last 8 days. The issue has been sent to the local rep and I guess I can try to work with him to get a replacement pump. But I am not convinced that a replacement pump will matter. Why do I get these alarms and so many people don’t??? 😩😩😩

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Other Comments: I truly believe that false occlusion alarms are related to a design flaw in Tandem pumps. I have so many questions. What percentage of Tandem pumpers experience these alarms? It is hard to tell because social media only attracts those having the problem. Are there common characteristics for those of us getting the alarms such as low TDD of insulin and small boluses? Or is it that certain pumps have overly sensitive occlusion sensors? I could go on and on with questions.

At the same time I want Tandem to succeed. I like almost everything about my t:slim X2 and I appreciate the innovation and good customer service that comes from this company. There are few pump choices these days and my being on Medicare reduces that number even farther. My primary D-tech loyalty is to Dexcom as my CGM and I am unlikely to return to Medtronic although I was previously happy with my Medtronic pumps. At this time Omnipods are not a good financial option for many of us on Medicare and I have always been fine with a tubed pump. I am intrigued by Bigfoot Biomedical using the Freestyle Libre and keep my fingers crossed that it will be a future option for me.

I do not follow all of the Tandem rules. Because of my low TDD of insulin, I refuse to change my cartridge every 3 days and throw away more insulin than I use. I change it about once a week while replacing my infusion sets every two days. This was how I operated on Medtronic and Animas and it works for me. With my first X2 I tried changing the cartridge every 3 days a few times and still got occlusion alarms.

I have always had superb customer service from Tandem. Although I am continually frustrated by false occlusion alarms, I do not regret my choice of the Tandem t:slim X2. If I had to choose a new pump today, I would probably choose the X2 again.

But false occlusion alarms are a problem.

***** Relevant Links *****

A Review of the Tandem t:slim X2

A 5-month Review of the Tandem t:slim X2

Tandem t:slim X2 and Dexcom G5: It Takes Flexibility

Living in the Orange: When Diabetes is Tough

Posted on March 19, 2018 by Laddie

Diabetes is hard these days. I am usually a good problem solver and lately my usual fixes aren’t working. I am seeing patterns that differ from my normal ones. I am not sick. I am not on new medications. I am long past menopause and don’t think I’m dealing with raging or sagging hormones. Other things are sagging but that is a different story for a different day and a different audience.

I’m seeing large spikes after appropriately-bolused moderate-carb meals. My post-breakfast walks are not ameliorating morning blood glucose rises. I am giving ineffectual correction boluses all day long. My numbers climb on 6- to 10-mile hikes. The new pump profile “More” and its bucketfuls of insulin has not made a noticeable improvement.

I haven’t gained weight in recent months, but I do weigh almost 10 pounds more than 4 years ago. My doctors like that but my clothes don’t. My daily average steps are less than in previous years but arthritis and a recent bout with plantar fasciitis have dictated that I pay attention to sore joints. Abby the Black Lab will be 12 years old on Thursday and our walks are shorter than last year. And the year before. Some days we walk and I drop her off at home so I can go farther.

An old dog and an old lady.

But definitely some physical changes that might warrant more insulin.

I am frustrated with my diabetes technology.

Despite being a huge fan of my Dexcom G5, I go crazy with alarms claiming my BG is 48 and it is 98. With alarms that scream 189 when my meter says 140. With alerts that declare 240 and it is…240. And alarms that alert for BG’s of 52 and although I feel fine, my meter says 52. I accept, but hate the Medicare requirement that I use only my Dexcom receiver and not my iPhone, Apple Watch, and Tandem pump.

My pump was replaced a month ago due to a failing battery. Yes, I am still not on board with a rechargeable pump and yearn for the security of carrying extra pump batteries in my meter case. The new pump has an unresponsive T-button which means that every time I turn on or off my pump screen, I have to push the button once. Twice. Sometimes four or five times. The Quick Bolus feature rarely works because I get error messages of too many button presses or it just times out when the final push to deliver insulin doesn’t work. There is a possibility that I will be getting a replacement pump but unfortunately Tandem has changed the T-button to a “two-pronged design” and a new pump might not solve the problem. Facebook tells me that I am not alone in the woes of a stubborn, mushy, unresponsive T-button. I don’t know why Tandem changed the button design but I do know that whatever problem they solved created another. The T-button is the gateway to every interaction with my pump. When the T-button is problematic, my pump experience is problematic. 4 weeks of practice with the new button design has only marginally improved my success rate.

Five years ago when I was cruising in the “Doing Okay” zone of diabetes, I wrote a blogpost titled “It’s Not as Hard.” I concluded that “I think the reason I’m feeling good these days is that my hard work seems to be having good results.” By substituting a few words, I can describe my mindset these days. “I think the reason I’m feeling bad these days is that my hard work seems to be having bad results.”

As anyone with diabetes knows, it is hard to keep making good decisions when the numbers don’t reward the work. If a 12-carb cup of applesauce spikes me to 250, I might as well have Nutter Butters or Oreos. I have definitely fallen into this pattern and thus am not an innocent victim in my diabetes distress.

I know that I need a total reset in my diabetes life and things that have worked in the past include severe Dr. Bernstein-like carb restriction, the Whole 30 diet, and the untethered regimen. To be determined….

Part 2 of the Story

I wrote the earlier section of this blogpost on Friday morning and decided that since I do not entirely trust my pump and insulin absorption that I would choose the untethered regimen option. This plan entails taking a certain percentage of basal insulin by injection in combination with pump therapy. As of Friday evening I am taking 3 units of Lantus at both 7:00pm and 7:00am with the remaining 50% of basal coming from my pump. My blogpost “Building a Foundation with Lantus” gives a good description of the untethered regimen and provides links to other blogposts and articles on the subject.

How is it working? Amazingly well and on Saturday morning, I immediately began seeing some familiar flat lines between meals. The unexpected and unjustified spikes are gone. No doubt I am being careful about food choices but that didn’t make a significant difference in recent weeks. Once again I marvel at how much easier my diabetes is when I combine injections and pump therapy. Too bad it is so much more work.

I think a stable base from two daily Lantus injections protects me from absorption issues with my pump. I am taking slightly more basal than previously and maybe that’s the only difference. I am at a stage in life that I might consider going back to MDI (Tresiba-ready?) although I’m not psyched to abandon the convenience of bolusing with a pump. Ironically Basic Medicare with a Supplement plan makes pumping a much cheaper alternative than injections.

For the moment the arrow on my dia-bete-meter has moved from “Kind of Crappy” orange to a familiar place between “Okay-ish” yellow and “As Good As It Gets” light green. This zone isn’t perfection but it is an area where hard work and good decisions usually reward me with reasonable BG numbers. That’s all I can ask for and I am doing better today than a week ago and a month ago.

One small change in insulin delivery. One big improvement in BG numbers and emotional health.

When Diabetes Screams for Attention

Posted on February 26, 2018 by Laddie

Tonight I am in Phoenix.

No, that was last week.

Today I am in Minneapolis.

No, that was two months ago.

Tonight I am in Charleston. Well, kinda that but a few miles northeast. I am in South Carolina-my birth state.

I am here to care for my sister who just had back surgery. She is older than I am in real person years. She is younger than I am in Type 1 diabetes years

But she knows the drill.

Test your blood sugar.

Talk tough.

Take your insulin.

Eat lunch.

Say you’re fine.

Telephone your sister in the next room because you are….

Sweating.

Shaking.

Terrified.

Your BG is 36.

That wouldn’t be so bad except earlier today it was 45.

And yesterday it was 48.

And the day before 38.

And mixed in with those numbers were some 380’s.

The symptoms are bad and glucose tabs aren’t helping. Prune juice is good for old-lady bowels but not a quick solution for blood sugar levels.

Orange juice might work, but too many liquids can be counter-productive with lows. Says she who once projectile-vomited a second glass of juice over a friend.

So I grab my brother’s stash of honey and feed it to my sister teaspoon by teaspoon.

40 minutes later her BG recovers to an acceptable number in the 90’s. What would have happened if I hadn’t been there? Only D-parents and T1’s in “The Club” know the honey trick.

The visiting nurse came the next day and asked if we had called the doctor after the bad low. Huh? Why would we call the doctor?

Meanwhile the younger sister who uses a pump and a CGM goes crazy because the older sister won’t consider a pump. Won’t consider a CGM. Won’t even switch to Humalog from Regular.

Her way has worked for her. At least she thinks so. Quitting smoking and major surgery have exposed flaws in her care that need facing. At least I think so.

Meanwhile as I was slogging through my sister’s health stuff, my Type 1 screamed out for attention.

Look at me! Look at me!

My pump’s rechargeable battery failed with an overnight drop to 15% charge one night and 5% the next. Out of town and a holiday weekend to boot. Kudos to Tandem as a replacement pump was shipped from California and arrived in South Carolina within 24 hours.

My sister is headstrong and adverse to change. But she does fine in her world and will continue to do fine in her world. Ultimately she gets to make her own choices.

They are not my choices. But I have my diabetes and she has hers.

I am headstrong and have been known to be pushy and a PITA.

I was helpful for nine days.

Both my sister and I were glad to hug good-bye on Thursday and not try for day number ten….

*******

The Story: Two weeks ago my sister had major lower back surgery. Despite the number of times that she told the neurosurgeon and his medical team that she has Type 1 diabetes, the hospital orders specified a Type 2 regimen and she was not given long-acting insulin. Holy sh*t! This is a teaching hospital in 2018. I had offered to come for the surgery but my brother wanted me there for the recovery and promised to keep her alive in the hospital…. Thanks to a nurse advocate, he did.

My sister and I have always handled our diabetes differently and we’re both relatively healthy after my 41 years and her 37 years. My 2013 interview with her continues to be one of my most-read blogposts.

I accept that my sister will not use a pump or Dexcom CGM, both of which would be covered by Medicare at no out-of-pocket cost. The one thing I will continue to argue for is a Freestyle Libre. It is physically and emotionally less invasive than other CGM systems and possibly something she could live with. Although I appreciate the safety from middle-of the night Dexcom alarms, my sister doesn’t want that. I think that she would quickly appreciate the ability with the Libre to frequently scan her arm to see BG readings, 8-hour trends, and directional arrows. Had the Libre not required a physician prescription I would have purchased it, stuck in a sensor, and made her use it.

So Sister, I’m not giving up. Check it out!

A Libre is covered by Medicare under part B durable medical equipment.

Freestyle Libre.

Amen.

Diabetes Supplies under Medicare: Hard Work

Posted on January 25, 2018 by Laddie

Yesterday a couple of diabetes friends on Medicare got in touch with me to see how things were going with the reorder of my pump and CGM supplies.

One friend emailed: “Just checking in to see how your Dexcom reorder went. Did it ship? My bundle arrived yesterday (Tuesday).”

I replied: “My Dexcom reorder has not yet shipped…. It is being processed today so I expect it early next week.”

She also mentioned: “I am interested to hear how it goes when you order your pump supplies for 2 day changes.”

I replied: “I think that I will be getting 4 boxes of everything which is less than the 45 sets I would like but more than the 3 boxes the previous lady said….”

A second friend checked in through Messenger giving me an update of his D-life and indicating that everything was going smoothly with his Dexcom orders and his life in general.

I mentioned: “I haven’t written anything on my blog in a while because I don’t have much to say these days. That’s actually a good thing.”

A few hours later things fell apart and my smiles turned into grimaces of frustration. And here I am writing a blogpost.

Let me say that my supply orders are not completely straightforward. I am lucky to escape the cold and snow of Minnesota in the winter and spend several months in Arizona. I am paranoid about medical supplies ending up frozen on my front porch in Minnesota and always double-check with suppliers that they are using the Arizona address. Secondly I am at a stage in life that I need to change my infusion sets every 2 days. My skin and tissue have gotten less durable as I’ve aged and 3-day sites leave me with inflammation at the insertion site, itching and rashes, occasional bleeding, and poor absorption. Fortunately I had been warned in December that in 2018 Medicare was only covered 30 infusion sets every 90 days and I needed physician clinical notes to override that restriction. At my December endocrinologist appointment, I discussed this with my doctor and ensured that she included this in the visit notes.

Before I describe my supply woes, I should say that it is not all Medicare related. Unfortunately lots of people with diabetes struggle with insurance and suppliers to get their supplies. I have been uniquely lucky that I never had problems before getting to Medicare. I am someone who had fabulous service from the universally-hated Edgepark and never had my insurance question anything. My orders reliably arrived 3-4 days after ordering. I am new to waking up in the middle of the night and worrying about getting the correct supplies (and enough supplies!) at the correct location when I need them.

You don’t need all of the details, but both Dexcom and CCS Medical have emailed and called several times in the last 10 days, each time with a different rep and no realization that the order has been already been discussed and finalized. A Dexcom rep called me yesterday afternoon to see if I was ready to confirm my supplies for this month. I said it had already been done but went through everything with him and confirmed that the order would be shipped to Arizona. An hour later I received an order confirmation shipping to……Minnesota. I called Dexcom and spoke with another rep who had to once again confirm the supplies I needed. She placed a new order and canceled the order going to Minnesota. I think everything is OK and it only took 4 phone calls and 3 emails. And in 3-1/2 weeks I get to do it again!

CCS Medical has been equally attentive as I have received multiple emails and spoken with three different reps about my order. The first rep took my information, changed the shipping address, and indicated that I would only get 3 boxes of infusion sets. She told me that once my doctor’s clinical notes were received, I would be shipped the additional supplies required. A few days later a young man from CCS called and asked if I was ready to order. I said that I had already ordered but we went through it again. He confirmed that I would get 4 boxes of infusion sets so I assumed that they had received my doctor’s notes. After the Dexcom mess yesterday, I went online and checked my CCS order and saw that 3 boxes of infusion sets and cartridges were being shipped. But at least they were going to Arizona!. I called CCS. This rep confirmed the 3 boxes and said that there was no record of the young man’s call on Monday. She said that he didn’t work for CCS?!? She also said that my endo had not submitted clinical notes.

My endo’s office historically gets an A+ in promptly submitting required medical orders and clinical notes for my diabetes tech and supplies. But I called and faxed the office this morning and asked that the needed info to be sent to CCS again. I will keep following up with CCS because I absolutely require more than 30 infusion sets for the next 90 days.

My Thoughts: Medicare has not been horrible in providing what I need to stay healthy with Type 1 diabetes. Compared to many people with diabetes around the world, I am still a privileged patient. The issue has been that it takes a lot more work to ensure that I get what I need and what I am owed. Diabetes is always in the forefront because I have to keep checking that things are being handled correctly. It is like my life resets every 90 days and I have to start from scratch again. I have to see my endocrinologist every 3 months instead of my normal every 6 months. Now with Dexcom it’s a 30-day cycle due to Medicare rules. My blood glucose numbers are similar to my pre-Medicare numbers. But diabetes is in my face all of the time. It is a bigger burden and I worry more.

But tomorrow I am going on a 9-mile hike. I have what I need today and tomorrow.

So FU Diabetes and Medicare and Dexcom and CCS.

I’ll deal with you next week.

Not FDA Approved

Posted on November 26, 2016 by Laddie

After my husband and I finished putting up the Christmas tree this morning, I discovered that my Dexcom G4 Share receiver was missing. We searched tree branches, boxes of decorations, upstairs, and downstairs and couldn’t find it. I knew that the receiver was somewhere in the house because I was getting numbers on my phone through the Share app.

My BG at this point was in the 140’s several hours after breakfast and normally I would take a correction bolus. Instead I ate a couple of glucose tabs and hoped that I would hear vibrating alerts as my BG passed over 160. No luck. My BG went up but we heard nothing. (All of my alerts are set to Vibrate.)

Once my BG hit the stratosphere, I gave up on high alerts. My only recourse was to drop below 55 and get the mandatory audio alert. I injected a mega-dose of insulin and got ready for the gluco-coaster ride. Don’t try this at home, Kids.

It took a while but eventually I was below 100 with double down arrows. About this time my husband asked if an ambulance ride would cost more than replacing the receiver. I explained that I had reached my deductible for the year so emergency care would be free…. Then I assured him that I would be okay and ate a couple of Smarties to control the BG drop.

We didn’t hear vibrations as the BG dropped below 70. So it was 55 or Bust!

Finally we heard muffled audio beeps, but we couldn’t figure out where they were coming from. Certainly not near the Christmas tree or the couch or the many boxes where I expected to find it. I’m not sure how many minutes separate each series of alerts—maybe about ten. Finally on the 3rd or 4th round of beeps, we found the receiver upstairs in the pocket of my pajamas.

This should be the end of the story, but it is not. The reason that I had not checked upstairs is that I had been on a 40-minute walk long after getting dressed. I had seen reasonable BG numbers on my Apple Watch while walking and given no thought to the idea that the receiver was not with me.

It turns out that obviously my receiver was upstairs all morning and the number I was seeing on my Apple Watch was from the Watch Sugar app. When the Dex Share app on the phone and watch loses contact with the Dexcom receiver, it displays blank dashes instead of numbers. Had I been using this app during the walk, I would have noticed a problem. But I was checking my watch face with the Watch Sugar complication. Well, I learned today that the Watch Sugar app will keep displaying the last number received whether it is 30 seconds ago or 5 hours ago.

Once my BG returned to normal according to my meter, I turned off the Dex receiver for 20 minutes. As expected, the number 46 for Watch Sugar never changed while the Dexcom Share app (not shown on watch face) quickly showed no data. Hypothesis confirmed. watch-face

Everything is now fine in Diabetes Land.

I found my Dexcom receiver.

My post-Thanksgiving low carb diet got blown to bits with glucose tabs, Smarties, an apple, a pear, yogurt, and an English muffin.

I learned that it is better to keep the Dexcom app open on my watch rather than rely on Watch Sugar.

My BG’s are stable and back in range. Dexcom 91. Freestyle 93.

Just another day with Type 1 diabetes.

Postscript: Sometimes I think I have little control over my diabetes. Today I felt totally in charge of what I wanted my blood glucose to do. I never felt that I was doing anything dangerous. I was not alone and I had lots of orange juice and glucose tabs available. That being said— please remember that nothing you read on this blog should be considered medical advice or even good advice.

The Last D-Tech

Posted on August 16, 2016 by Laddie

The last CGM.

The last pump.

The last D-tech before going on Medicare.

In early September I will purchase my last CGM system before going on Medicare in the spring. That will be followed by my final pump selection in early December. Rather than view these decisions with my usual excitement, I sit here with a stomachache of dread, frustration, and uncertainty. I tend to be naive and think that there is a “correct” decision when it comes to things like this, but there is enough going on in both the reimbursement and technology landscapes that I am faced with a lot of doubt.

First the CGM. It will be Dexcom for sure, but I am torn between staying with the G5 or going back to G4 platform. Although Dexcom is primarily marketing the G5, I use an Animas Vibe and have the option of staying with the G4 for the foreseeable future. (Please ignore the fact that I rarely use my pump as the CGM receiver. Click here for an explanation.) Currently Medicare does not cover continuous glucose monitoring for seniors with Type 1 diabetes. Many individuals and organizations are working hard for a policy change, but I am discouraged and convinced that I will have to self-fund my CGM starting at age 65.

Dexcom has made and continues to make decisions that make self-funding a CGM increasingly expensive. Looking at transmitters, G4 transmitters had a 6-month warranty but many of us experienced a much longer life than that. My most recent G4 transmitter lasted a year. G5 transmitters place a higher demand on batteries, but also have a software-mandated drop-dead date of about 100 days. Thus for someone who self-pays, transmitter costs have almost doubled from G4 to G5.

As yet no changes have been made that impact the cost of sensors. Unfortunately as reported at Diabetes Mine last week, the Dexcom CEO brought up the idea of Sensor Auto Shut-off during the latest quarterly earnings call. This was presented as a safety consideration and my initial snarky response was tweeted by Diabetes Hands Foundation: “So we can kill ourselves on Day 1 of a sensor when Dex is at its most inaccurate, but not on Day 11″ bit.ly/2b4fmjx @MNAZLaddie.” In Dexcom’s defense, no one can ignore the financial repercussions to Dexcom of customers using sensors for 2-3 times as long as warrantied. spiral with words_2016

I currently use most of my sensors for about 2-1/2 weeks. I have full insurance coverage for sensors, but experience better accuracy the second week than the first. I often finally change out a sensor for scheduling reasons or because it falls off despite SkinTac and additional tape. Very rarely is it because of performance problems. I doubt that there will be sensor auto shut-off until the G6, but it is another change that will greatly impact those who self-pay.

I think it makes sense for me to return to G4 for now, especially since I can use the Share feature to see data on my phone. Going back to carrying a receiver won’t bother me much, especially because I like the alarm profiles of the receiver much better than my phone. I am also tired of keeping my phone with me all of the time.

The CGM decision is tangled in my thoughts about a new pump. I am not in love with the Vibe and it doesn’t make sense to buy another one. Tandem is close to retiring the t:slim G4 and I know that if I go with Tandem, I would prefer to buy the t:slim X2 to be released in the fall. The last time I selected a pump for CGM reasons was the Ping in 2012 and it wasn’t a good choice for me. I’ll be writing more about pump musings in the fall, but as with previous pump decisions, it will be complicated by insurance considerations and the uncertain release date of new technology. Medicare rules will also come into play.

One undiscussed topic in today’s post is: If the cost of using a Dexcom continues to spiral upwards and there is no Medicare coverage, at what point will I choose to live without a CGM? Going back to the second paragraph of this blogpost, that is the sort of decision that fills me with “dread, frustration, and uncertainty.”

And fear.

*******

I sometimes conclude technology posts with the admission that my concerns are a #firstworldproblem. I am a privileged patient when it comes to diabetes and I am grateful.

In My Diabetes World

Posted on February 16, 2016 by Laddie

I have some “meatier” blogposts that I need to finish, but I’ve been busy living life and not so busy writing about diabetes. From a “Life” point-of-view, that is good. From a “Blogger” point-of-view, that’s a definite faceplant.

Just so February doesn’t fly by with zero blog entries, here are some diabetes things going on in my life.

Number One! I lit up Facebook and made many D-friends jealous with the news that I had lunch with Kate Cornell last Thursday in Prescott, Arizona. The skies were blue, the temps were warm, and the company was great.

As I summarized our visit: “It was a wonderful day, Kate! Your friendship is one of the good things that has come from diabetes in my life…”

Number Two! I spent quite a while yesterday morning trying to figure out why I couldn’t fill my prescription for insulin. Obviously a #firstworldproblem because I knew that it was just a pharmacy and/or an insurance glitch.

That’s a reminder that if you haven’t yet contributed to the Spare a Rose campaign, please click here to donate. It is more than an insurance/pharmacy glitch when children with Type 1 diabetes in developing nations die because they have no access to insulin. Although Valentine’s Day has passed, it is not too late to Spare a Rose to Save a Child.

To Donate, Click Here

After several phone calls to my endocrinology office and pharmacies in both Minnesota and Arizona, I will be able to pick up my 90-day supply of Novolog tomorrow. Should I mention that the insurance-contracted price is $1103.89 or $275 per vial? In June 2014 I wrote a blogpost titled “Then and Now” and shared a 1977 bill of $3.91 for one vial (a 2-month supply) of Lente insulin. Not much else to say…. Scan_Insulin2_1977_Blog

Number Three! My sister is flying across the country this week to visit me in Arizona. She Dex G5 Phone also has Type 1 diabetes and my interview of her is one of my most-viewed blogposts ever. We couldn’t be more different in our diabetes care. She uses Lantus now only because Lily quit making Ultralente in 2005 and her refrigerator stockpile ran out. She uses Regular insulin as her bolus insulin and has chosen not to use Humalog, Novolog, or Apidra. All of this is with vials and syringes. I of course have used a pump and CGM for years. Fortunately we are both doing well after almost 4 decades of diabetes.

Because of my free upgrade to the Dexcom G5, I have several unused Dexcom transmitters. (My current G4 transmitter has been in use for 11 months with no signs of failing.) I am going to ask my sister whether she would like to use one of my G5 transmitters along with her iPhone to try out a Dexcom CGM. I suspect that she will say no, but maybe not. Unfortunately she is older than I am and already on Medicare. Maybe it is cruel to let her experience life with a CGM when she would have to self-pay to continue on the system.

Number Four! I have been hiking a ton this winter and playing golf at least once a week. Abby the Black Lab has been enjoying two walks a day. My Fitbit is exploding with steps and I have averaged 18,850 steps (8.5 miles) per day for the last 4 weeks. If only the other parts of diabetes care were as easy for me as exercise. I’d be willing to trade 5,000 steps (or even 8,000 steps!) a day to anyone who would cook me delicious, healthy, low-carb dinners.