Lots of I Don’t Know’s

Okay. Let’s talk about Basic Medicare** and the Dexcom G6. Then let’s talk about Basic Medicare** and Tandem Basal IQ. And then let’s just admit that we don’t know the answers to our questions and that we’re not going to get answers in the next 5 minutes.

Who, what, when, where, why? 

Yeah, I don’t have a clue.

As someone on Medicare I’ve felt left out in some of my Facebook groups recently. In the Dexcom D5/G6 Users group and the DEXCOM G6 group, the vast majority of topics are about the G6. Do you like it? What is great? What is terrible? Adhesives, accuracy, and sensor longevity. Insurance and supply issues. The Tandem tSlim Pump group is all about Basal IQ with the majority of users stating that it is fabulous. There are questions about how it works and at what point basal insulin is suspended and then resumed. Stories about climbing Mt. Everest and others wondering about how to coordinate the prescription from their doctor, the training, and the software download. I don’t fit in anymore and I have no advice to give. In fact I am a little bored in these groups and mostly not checking in.

You see—I’m on Medicare. I don’t have the Dexcom G6 and my Tandem X2 t:slim pump is not updated to Basal IQ. I am not whining. Okay, maybe I am–just a little. But mostly I am just stating facts.

After weeks of rumors, it was officially announced on October 16 that Medicare will begin covering the Dexcom G6 for Medicare recipients. The nitty-gritty has not been worked out but it is estimated that April 2019 is a reasonable target date.

For those of us who have been involved in advocacy for CGM coverage by Medicare for years and who have been joyously receiving coverage since the second half of 2017, this announcement is welcomed but generates more questions than answers. I think that the more you know, the more questions you have. Addressing customers on the Dexcom G5, the news release states:

“Once G6 is available, Dexcom will be reaching out to current Medicare G5 customers when their transmitter is eligible to be replaced. Dexcom will also discuss the G6 and the Medicare beneficiary’s eligibility during routine monthly contact.”

That sounds very straight forward but I worry that it is not. The elephant in the room for those of us on G5 is The Receiver. In January 2017 after the initial approval of the Dexcom G5 by Medicare, I wrote a post titled “Medicare and CGM Coverage: Love Your Receiver!” and explained how Medicare justified the approval of the G5 as Durable Medical Equipment (DME) because the receiver had an estimated 3-year life. Therefore for those of us on Medicare, the G5 receiver has a 3-year warranty. Although we are now allowed to use our smart devices to read our G5 data, Medicare regulations still state that the smartphone is used “in conjunction with” the receiver. And FDA approval of both the Dexcom G5 and G6 requires a receiver to be provided as part of the initial bundle.

I have an old-style Dexcom G5 receiver that cannot be updated to G6 in contrast with the newer touchscreen G5 receiver that can be updated remotely to G6. Medicare through stupid regulations that I don’t understand does not allow Medicare recipients to participate in manufacturer upgrade programs. Thus Dexcom cannot give me the option of paying $100 or $25 or whatever to exchange my dated receiver for a touchscreen G5 or G6 receiver. 

Technically my G5 receiver is warrantied for 3 years and I can’t upgrade it. Am I going to be able to switch to the Dexcom G6? Interestingly, the Dexcom press release only addresses the transmitter and makes no mention of the receiver. Without knowing the details of Dexcom/Medicare negotiations, I have no way of knowing my status. Is everyone forgetting the FDA requirement of the G6 receiver? Is Dexcom going to provide G6 receivers to current G5 users at no charge? Will I get a G6 transmitter and sensors without a receiver? IMO there is no way in h*ll that Medicare will pay for another receiver. Because the Medicare/Dexcom relationship is on a subscription basis, will all of the previous rules about upgrades be thrown to the wind?

As I said above, the estimate is that Dexcom G6 products will be provided to Medicare recipients starting in April of 2019. I have neither seen nor heard of specifics regarding this rollout. There are lots of discussions and rumors floating around Facebook but no one really knows. I have been on Medicare long enough to live by the mantra: “When I know, I’ll know. Until then, I won’t.”

If I were not using a Tandem X2 pump, I would not care much about using Dexcom G6. I look forward to an easier insertion and no required calibrations with the G6, but neither is a huge deal for me. But I really look forward to updating my Tandem X2 pump to Basal IQ which automatically shuts off basal with predicted lows. And then the future Control IQ which will function as an early generation artificial pancreas. 

But if things are in the dark with Dexcom and Medicare, they are really in the dark with Tandem and Medicare. The last communication I had from Tandem regarding the use of my pump as a receiver for my Dexcom CGM was in November 2017. The webmail stated:

“Dear Customer: As someone who, according to our records, has a t:slim X2™ Pump and also has Medicare for health insurance benefits, you may be aware that Medicare coverage of continuous glucose monitoring (CGM) is limited to viewing CGM data only on a Dexcom receiver and NOT a smart phone or an insulin pump.”

Since then I have heard nothing.

Frankly I think that the current Tandem policy regarding Medicare is: “Live and let live.” Some people are being told by their Tandem reps that it is okay to use their pump with Dexcom. But I do not think that is true because there has been no official announcement allowing the pump as a Dexcom receiver. At the same time there is no enforcement of the policy and Tandem is not sending reminder emails about Medicare. Although one part of me thinks that it is poor customer policy that Tandem is not communicating with Medicare recipients, the other part is okay with just ignoring the problem.

Unfortunately the problem of Tandem and Medicare will come to a head when the Dexcom G6 is distributed to Medicare users. Will we be allowed to download the Basal IQ software update (which requires G6) to our X2 pumps? Tandem has said nothing and unfortunately IMO it would be a total violation of current Medicare policies to allow the update.

Once again we don’t know the answers.

No answers to who, what, when, where, why.

Just a reminder to be patient and go with the flow…

Of no information…

and…

Fingers crossed for the ability of those on Medicare to benefit from the latest and greatest in diabetes technology.

Until then, just remember the Medicare mantra:

“When I know, I’ll know. Until then, I won’t.”

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** Please note that although Medicare Advantage plans must cover everything covered by Basic Medicare, they may have more flexible policies than Basic Medicare and provide more benefits. Currently some of these plans are already covering the Dexcom G6, but most are in line with Basic Medicare.

RDBlog Week Day 3: Mindfulness

Today’s Topic: Mindfulness – What does mindfulness mean to you and how can it help as we live with our autoimmune condition?

When I consider people whom I consider to be “mindful,” I find that I admire most of them and get totally annoyed by a few. I think it has to do with confusing the definition of mindfulness with stereotypes, pretense, and gobbledegook. It may have to do with having come of age in the ‘60’s and ‘70’s when many things we now associate with mindfulness were linked with “those hippie people.” It may have to do with a few individuals in my life who have seemingly morphed from mindfulness into total self-absorption. Opposed to them are some women whom I consider the epitome of mindfulness and their inner peace manifests through their kindness to other people. I don’t know whether other people would describe me as mindful and I probably come across more as a down-to-earth Midwestern Grandma who used to be an accountant. At the same time I benefit greatly from the mental aspects of my twice-weekly yoga and have a history of using meditation techniques to deal with anxiety and occasionally pain. So maybe I am more mindful than I think.

Before I go too far, I should start with a definition and I’ll use one from the online Greater Good Magazine of the University of California Berkeley.

“Mindfulness means maintaining a moment-by-moment awareness of our thoughts, feelings, bodily sensations, and surrounding environment, through a gentle, nurturing lens.

Mindfulness also involves acceptance, meaning that we pay attention to our thoughts and feelings without judging them—without believing, for instance, that there’s a “right” or “wrong” way to think or feel in a given moment. When we practice mindfulness, our thoughts tune into what we’re sensing in the present moment rather than rehashing the past or imagining the future.”

I tend to use meditation and mindfulness as synonyms and that is not correct. IMO you can be mindful by living with awareness and acceptance of your life and you don’t have to sit cross-legged and meditate. You can use deep breathing to relax and ease pain while you watch TV in the evenings. You can learn to accept your chronic medical conditions without giving up the fight to maximize your capabilities and overcome barriers to good health. In cycling class I sometimes close my eyes and pedal with the music while blocking out the visual cues of numbers and colors on the monitor. The inner focus makes the hard hills easier. Maybe that is a formula for a mindful life where we can gain strength by accepting what is inside us rather than fighting outside stimuli. For the most part fear of the future does not help us deal with the present and for sure none of us thrive with self-criticism. 

In general I am bad at meditation. I used to be able to lie down in my living room and complete an entire series of breathing and progressive relaxation scripts. My mind and body felt renewed and eerily wonderful afterwards. These days my thoughts wander and I think of this, that, or the other. I don’t seem very interested in reining in my random thoughts and maybe I just don’t need meditation at this point in my life. Or maybe I just don’t practice it enough to get much benefit.

But I like to think that I am somewhat mindful and that my life with multiple autoimmune conditions is enhanced when I accept my today with no judgement on yesterday or tomorrow. I strongly believe that when I am comfortable in my own skin, I am a better spouse, friend, parent, neighbor, and citizen of the world.

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If you would like to read other blogposts from today’s topic on RDBlog Week, click here.

RD Blog Week Day 2: Flexibility for Staying Fit

Today’s Topic: Tips How do you stay fit, cope with stress, relax, or capitalize on a great day. Tell us your secrets for the best life possible.

When the arthritis gods chose what type of arthritis to add to my life, they picked one that was a good fit for me. That sounds crazy and of course I wish that my list of chronic health conditions did not include any type of arthritis. My systemic arthritis is inflammatory spondyloarthropathy. It is a type of arthritis where for many people pain and stiffness improve with movement as opposed to rest. Before my diagnosis, the most painful thing for me was sitting and I couldn’t drive for more than 20-30 minutes without getting out of the car and stretching. But I could hike 10 miles or walk 18 holes of golf and feel great. My symptoms did not fit with many types of rheumatic conditions because I did not experience fatigue.

These days I deal with both spondylitis and osteoarthritis and I am extremely lucky that fatigue is still not part of my daily battle. A good day for me is a day with exercise. My body feels better with movement and for sure my soul does. My biggest challenge is that my feet, hands, and elbows do not allow me to participate in many of my favorite activities.

So how do I incorporate exercise in my life? 

Flexibility is the key.

Flexibility in replacing previous activities with activities that work with my body. Tennis and other racquet sports are a distant memory. But I can ride a bicycle and participate in studio cycling classes as long as I wear my lace-up hand/wrist braces.

Flexibility in how I participate in sports. I am still reeling from the recent, but probably permanent inability to walk for 9 holes of golf much less 18. But once my left hand fully recovers from surgery, I will be able to play golf using a riding cart. 

Flexibility in where I exercise. I previously belonged to a Lifetime Fitness Club. Although participants in the fitness classes were encouraged to modify exercises to their abilities, I found that I was modifying everything. I moved to the local YMCA and have thrived with a menu of senior-oriented fitness classes. 

Flexibility in the level of my activities. I used to do “regular” yoga. Now I do “Forever Well” yoga and occasionally gentle yoga. Both my 12-1/2 year old Labrador retriever and I have difficulty with long walks on pavement, but we can take multiple shorter walks through the day and go to the dog park with wood chip paths.

Flexibility in my attitude. I work hard to appreciate what I can do and not mourn over what I can’t. Acceptance improves with practice and my glass half full personality helps with that.

Flexibility in my joints, muscles, and tendons. That is kind of a joke because it is the hardest of the flexibilities for me to achieve. But I do my best to keep moving everything. I have to laugh at my rheumatologist who recommends that I push myself but only hard enough that I am not sore afterwards. I’ve never been able to figure that out until I’m sore afterwards….

In general my two kinds of arthritis feud over exercise. Undifferentiated spondylitis says “Go, Go, Go!” and osteoarthritis says “No Way!” But somehow we work it out with the goal of as many good days with exercise as possible. 

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If you’d like to read other posts on today’s RDBlog Week topic, click here.

RDBlog Week Day 1: Wildcard // Fitting In

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Today’s Topic:  Everything Else – Is there something we missed in this year’s prompts?  This wildcard is your place to add it in.  Not everything made our list so be adventurous and take us in a new direction.  Sometimes the everything wildcard is the seed of a new prompt for next year so let your mind roam and see where it goes.  Maybe mindfulness is on your mind?  Or perhaps you have a funny story?  We are all ready to hear the scoop on what is on your mind that was missed elsewhere.

Laddie_Head SquareI started blogging in the spring of 2013 in order to share my life with Type 1 Diabetes and to chronicle my journey towards Medicare. My blog title reflected the requirement to Test my blood sugar many times a day while knowing that diabetes was fickle and that I needed to Guess what would happen in the next ten minutes and the next ten hours. My attitude was and is to do my best and Go despite living with a health condition where sometimes 1 + 1 = 2 and other times equals 237 or 174 or 62. Although I stated in my first blogpost that I was living with several other autoimmune/inflammatory conditions, arthritis was not a big enough deal to warrant a specific mention. Five and a half years later I find that arthritis limits my life much more than diabetes. Sadly the list of favorite activities that I have abandoned or will have to abandon due to arthritis is growing longer. 

I have had Type 1 diabetes since 1976 and have been active in the Diabetes Online Community for almost 15 years. I had no problem finding my niche because my diabetes is “classic” Type 1 diabetes—whatever that means. The diabetes world used to be easily divided into Type 1 and Type 2 diabetes with a few pregnant ladies having Gestational Diabetes. But over the years diabetes social media has become more complicated as it has become apparent that there may be as many manifestations of diabetes as there are people with diabetes. In addition to Type 1, Type 2, Gestational, there is Type 1.5, LADA, pre-diabetes, MODY, Type 1 with insulin resistance, Type 2 with autoimmune components, and etc. and etc.

So here I am taking steps into the social media world of arthritis and finding myself in the “not sure where I fit in” category. I have a couple of online diabetes friends who live with rheumatoid arthritis and they have invited me into their arthritis online world. But I do not have RA and frankly have an easier journey of pain and disability than my RA friends. Interesting my “serious” and “systemic” arthritis is inflammatory spondyloarthropathy which can be every bit as debilitating as RA. But as the years go by it is apparent that the progression of my spondylitis fits very well with “undifferentiated spondyloarthropathy” as outlined in this article. My disease does not seem to have worsened much in the last 10 years and I continue to be very responsive to NSAIDs. 

Inflammatory spondyloarthropathy can have effects on peripheral joints of the hands, wrists, feet, and ankles. But all along my rheumatologist has emphasized that my peripheral joint issues are osteoarthritis. If I had doubts about his diagnosis, both a foot specialist and hand surgeon analyzed my x-rays this summer as “classic osteoarthritis.” In August I had surgery for the carpometacarpal (thumb/wrist) joint of my left hand. Foot surgery has also been recommended but I have chosen to do everything I can to modify my lifestyle to escape surgery. Unfortunately lifestyle modifications mean no more extreme hiking, no more long walks in nearby regional parks, and no more aerobics classes. I gave up tennis and pickle ball a long time ago. Fortunately I am able to participate in yoga and cycling classes at my local YMCA. I know that in the future swimming and water aerobics will be reasonable choices.

I used to feel out of place in the waiting room of my rheumatologist’s office. I don’t require a walker and for the most part feel strong and self-sufficient. But I look at myself at the gym these days. I wear lace-up wrist braces on both hands and last week added a knee brace for a tweaked knee. Unseen, but very important, are the orthotic inserts in my shoes. Then I add the diabetes paraphernalia of a continuous glucose monitor on the back of my arm and an insulin pump on my waistband. 

So I am not sure exactly how I will fit into RDBlog Week. But one thing about arthritis is that it is an equal-opportunity umbrella for many rheumatic diseases. Pain and disability don’t discriminate on whether or not you want to participate. I have found tremendous support in the online diabetes world and hope to find an equally supportive community in the arthritis world.

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If you’d like to check out other RABlog Week posts from today, click on this link.

Brittle Diabetes, Hand Surgery, and the Dog

My blog has been languishing in summer doldrums and it is time to check in or check out. Lest you think that the three subjects in the title are connected, they’re not—except kinda sorta.

Brittle Diabetes

Looking for information to update a health history document, I recently reviewed my medical record from a previous internist. I thought that his notes from my first visit were interesting. What jumped out was “Brittle DM” at the top of the page. A few weeks ago there was a Facebook discussion about the word “brittle’ as a descriptor of diabetes. Most people considered it to be an outdated and inaccurate term that should be trashed. I am a little more open-minded about the subject and believe that there is a small subset of people with Type 1 diabetes whose disease is much more difficult to manage than that of most of us. Diabetes Forecast had an article in 2014 that addressed the brittle diabetes debate and quoted a Brazilian endocrinologist who described brittle diabetes as “glucose fluctuation so severe that a person cannot have a normal life.”

I am not writing about brittle DM in order to start a terminology debate, but rather to illustrate that in the past many of us with Type 1 were labeled brittle and labile. My internist was not ignorant about diabetes in 2002 and other notes mention Type 1. He actually understood clearly that my diabetes was different than that of most of his other patients. As far as I know he had only one other Type 1 patient and he often asked about my technology, especially my CGM in later years, to learn more to help this other patient. 

Other comments from this visit showed that I was still using NPH despite having previously been under the care of a renowned endocrinologist. The new doctor immediately transitioned me to Lantus which resulted in the biggest improvement ever in my diabetes care. No reputable doctor could read this chart note without thinking Type 1 diabetes as I had frozen shoulder, dealt with hypoglycemia, and took Synthroid for the common comorbidity of hypothyroidism.

So in the old days, I had brittle diabetes and lots of the baggage that goes along with it. In 2018 I have regular hard-to-manage pain-in-the-neck Type 1 diabetes  and lots of the comorbidity baggage. 

Hand Surgery

Many of you know that I had hand surgery in mid-August for the carpometacarpal thumb joint of my left hand. Arthritis and bone spurs had resulted in enough pain that it was time to get it fixed. My rheumatologist assured me that this is one of the most successful joint surgeries and I hope that is the case. I am recovering as expected and trying to curb my impatience at not being good-as-new yet. I am still wearing a brace and dutifully doing the assigned exercises 3 times a day. I am back to spinning classes for exercise because I can do it mostly one-handed. My body and soul miss yoga but know that I can’t put enough weight on the hand to participate safely. I am on the mend and have at least recovered enough to type two-handed. BTW arthritis in this joint is one of the many gifts that post-menopausal women receive more often than other people….

The Dog

In May I shared that 12-year old Abby the Black Lab was diagnosed with chronic bronchitis. Despite using an inhaler all summer, her breathing has gotten worse and it has been determined that she has laryngeal paralysis, or more specifically GOLPP. The only treatment at her stage of the disease is surgery and I always swore that I wouldn’t subject a 12-year old dog to surgery. But Abby is still active, happy, eating and drinking well and with the vet’s advice, we have determined that euthanasia isn’t the ‘right” choice at this time. She is having surgery next Tuesday with a specialist in “Lar Par” (vet lingo). I hope we have made the right choice because Abby has always been a much-loved and perfect dog. Abby used to write posts for Test Guess and Go and this is my favorite.

The Intertwined Relationship?

Exercise is a cornerstone of my diabetes management. Hand surgery, as well as foot arthritis, has limited my exercise this summer and I am unable to do things like mow the yard and walk the golf course. Although I am doing intense studio cycling classes, the rest of my day is fairly inactive. Abby is not allowed to go on walks until she has recovered from surgery and that is another unfortunate reduction in my activity level. Diabetes does not like that and I keep bumping up the insulin and periodically rage bolusing. It doesn’t help that I have a recently replaced insulin pump and wonder if I just need different settings than the old pump. Or whether it is this or that or who knows what. My diabetes may not be brittle, but it sure is hard to figure out sometimes. So yes, everything is related: diabetes, arthritis surgery, and the dog.

Thank-you Tandem: A Replacement Pump

I recently wrote two blogposts (here and here) about false occlusion alarms on my Tandem t:slim X2 pump. I was not shy about sharing my frustrations and I want to update my story with the fingers-crossed!!! resolution of my problem.

I have always had good customer service from Tandem. Despite the long wait times on hold reported by some people on Facebook, I have never had to wait more than a couple of minutes. I have never yelled, cried, or been rude to Tandem tech reps, but lately I have worried that they might start to label me as a “customer from h*ll” as I repeatedly called to report more occlusion alarms.

The problem with false occlusion alarms is that when the pump is not shrieking about the stoppage of insulin, it works fine. Thus my pump passed all the tests that that Tandem support had me go through and in the end the in-house reps did not have the authority to authorize a replacement pump. The issue was referred to my local trainer. 

When my first X2 had weekly occlusion alarms for many months, I met with this trainer to review my technique on reservoir fills and infusion sets. We have a good relationship and when she heard that I had experienced 5 occlusion alarms in 9 days, she arranged for an immediate X2 replacement. The new pump arrived within 24 hours and I have been happily carrying the case-less pump in my pocket. So far there have been no occlusion alarms and I am cautiously optimistic that my problem is solved.

Although I am happy with the new pump, I don’t seem to be able to stay away from Velcro. Maybe it is an addiction…. Or maybe it is just the inability to accept diabetes tech when it doesn’t quite fit into my life. Soon I will be heading to South Carolina for a few days in the ocean and pool with grandkids and family. After that I am having hand surgery. Both occasions require a clip on the pump. 

The Tandem case with a clip would work for the surgery but not for the beach. I want a clip on my pump to attach it to the pants portion of my tankini swimsuit and the case would work for that. But when I am in the water, I want to use my Aquapac pump case (actually a Radio Microphone case) purchased many years ago as a waterproof case for my Medtronic pumps. It is an expensive and somewhat bulky solution that allows me to wear my pump strapped around my waist with guaranteed water protection. The Tandem case is too large to fit into the Aquapac. 

So I am back to a Nite ize Hip clip applied directly to my pump. Rather than using the two-sided tape that comes with the clips, I use Scotch Outdoor Mounting Tape because it is equally strong but much easier to remove. Unfortunately the Nite Ize clip is only marginally better than the Tandem clip when it comes to falling off my waistband and I applied Velcro hook pieces to both sides of the clip interior to provide some grip. People on Facebook have reported using heat shrink on the Tandem clip but I am not sure how that would work with the different design of the Nite Ize clip. And anyway, Velcro is what I know and Velcro is what I have in my junk drawer.

Today I have a new pump that seems to accept living in my pocket without a case. I have a Nite Ize clip applied directly to the pump which allows me to clip the pump to my swimsuit but is small enough to fit into various pockets and the Aquapac pump case. The clip is attached to my pump with a strong tape that is easy to remove when I decide to go clip-less or use the case instead. 

Pump. Clip. Velcro. No occlusions. That just about sums it up.

Tandem Occlusion Alarms: Crying Uncle

Last week I published a blogpost addressing my annoyance with false occlusion alarms on my Tandem X2 insulin pump. Periodically Tandem techs have advised me that using a case might eliminate the alarms and that has actually been my experience. But I hate the case which makes the pump heavy and bulky instead of slim and sleek. Thinking that maybe adding something to the pump to protect the vent holes might mimic the case, I experimented with attaching a black plastic ring to the back of the pump. 

A few hours after publishing the blogpost, I added an update:

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???😩😩😩

In my typical stubborn fashion, I put the case-less and clip-less pump back in my pocket. Fast forward to Saturday where I had another occlusion alarm—the 5th alarm in 9 days. (Please note that these alarms stop insulin delivery so they are a serious problem.) Not only did the blogpost jinx me, one of my Facebook friends who never gets occlusions got an alarm on her X2. Then another friend got an occlusion on his Medtronic pump. Occlusions are spreading like wildfire through the diabetes pumping community!

Maybe the wildfire remark is an overreach, but I cried uncle and put my pump in a t:case vowing to wear it clipped to my waistband. Unfortunately I had previously broken my black case  and was stuck using the pink case which I don’t like. Boy, do I sound like someone with a severe case of #1stWorldPrivilege! In my defense, Amy Tenderich of Diabetes Mine figured out a long time ago that design is important for diabetes devices and her 2007 “Open Letter to Steve Jobs” went viral.

The 24 hours that I wore the pink case reinforced now much I hate it. Both the shade of pink and the amount of black showing through the cutouts bug me. I decided to purchase a new case and was disappointed that black is out of stock in the Tandem Online Store and at Amazon. So it was back to the drawing board. I devised a minor engineering solution to secure the Tandem clip to the broken case by using Velcro in place of the missing plastic anchor strip. So far it is working and my fingers are crossed that the fix will be durable. The Velcro does double duty by adding “grab” to help prevent the pump from sliding off my waistband, an unfortunate common t:case problem. 

So it has been another-day another-adjustment to diabetes tech. If I continue to get occlusion alarms on this pump, I will now be totally justified in battling for a replacement pump. If a case solves the alarm problem, I should be happy. But I will still be frustrated. Frustrated that Tandem promotes the small size of the X2 with photos of the case-less pump. Frustrated that many people use the t:slim successfully without a case and I can’t. And maybe most importantly, frustrated that I still don’t understand why.

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7/30/18 Afternoon: I need to stop publishing blogposts because once again my fix that was successful for two days FAILED. The clip slipped out of place and the pump fell off my waist mid-morning. Ugh! My latest solution to prevent going back to the pink case is to attach a Nite Ize clip to the back of the case using strong outdoor adhesive tape. There are various pieces of Velcro on the inside of the clip to make sure the pump stays put. Although I do not miss my Animas pumps in many ways, I do miss the clip that easily attached to the pump and held it tightly on my waist.

Tandem Occlusion Alarms: An Engineering Experiment

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

Joining the YMCA: Celebrating Seniors 

A while back I wrote about how arthritis was messing with my life. I complained about sore feet and sore hands. If I had written the post at 2:00AM I might have described sore feet, sore hands, sore back, sore hips, and a sore soul. Despite all of that, I feel okay most of the time. But I am not stupid and know that I need to make lifestyle changes to help reduce joint pain. 

As someone who has lived with Type 1 diabetes for 41 years, I have gotten used to the idea that more than doctors and pills, I am the one in charge of my health. I make the conscious decision to monitor my blood sugar, eat reasonably well, and optimize my insulin regimen. But as I look at the last 4 decades, I strongly believe that I am healthy today because of exercise: tennis, golf, hiking, dog walking, step classes. Unfortunately I am finding that arthritis demands that I no longer hike 12 miles in the Arizona mountains or walk 6 miles on my hilly Minnesota golf course. Weight lifting benefits my biceps but my hands suffer. Planks and push-ups strengthen my core, but my elbows and shoulders rebel. Almost everything bothers my feet.

One of the benefits of my Medicare supplement plan is Silver & Fit where I can join a health club for free. In 2017 I selected the nearby Lifetime Fitness and enjoyed cardio, strength, and cycling classes. Unfortunately this spring I began to realize that despite trying to modify exercises to my capabilities, these classes were too taxing on my joints.

Thanks to a local diabetes friend, I was persuaded to check out the Southdale YMCA. She has belonged there for years and calls it her “home away from home.” She mailed me a copy of the long list of fitness and pool classes, some designed for seniors and others targeted for exercisers of various ages and fitness levels. After being faced with the possibility of both foot and hand surgery, I determined that it was time to check out the Y.

I stopped by one rainy morning in May and was immediately welcomed and taken on a tour. With little hesitation I joined on the spot. Fate determined that my free orientation session was with a trainer who happens to have a sister with Type 1 diabetes! We talked about exercise and low blood sugar and she showed me the stash of glucose tabs in the file cabinet at the fitness desk.

The senior exercise classes are organized under an umbrella of ForeverWell. There are three activity tiers: Just Getting Started, Already Active, and Exercising Regularly. Aging, illness, and surgery can shift you from one category to another and the boundaries are fluid. I am a good fit for “Exercising Regularly” classes and faithfully attend ForeverWell Yoga and occasionally ForeverWell Strength. I also participate in several cycling classes each week.

ForeverWell Yoga:  Imagine a studio filled with 75 people over the age of “don’t ask-don’t tell” and many well into their 70’s and maybe 80’s. You need to arrive early to get a spot although no one is ever turned away. The instructor uses kindergarten teacher skills to quiet the noisy group to get started at 8:15 on Tuesdays and Thursdays and reminds us to take care of injuries and sore joints. A long warm-up is followed by instruction in poses that increase strength, flexibility, balance, and mental health. There is something really inspiring about seeing a roomful of seniors in child’s pose or warrior two. I plan my life around never missing this class and I always leave feeling better than when I arrived.

ForeverWell Strength:  This class is mostly attended by women with an occasional guy hanging out in the back row. The formula is a step warm-up, strength work with weights and an elastic band, various exercises with a small ball, and then a cool down. None of it is hugely difficult, but the always-moving and always-smiling instructor keeps us on the go and I get a good workout. When I attend this class, it means that Abby the Black Lab misses her morning walk with friends at the dog park. My health versus the dog’s happiness. It’s a tough choice except on rainy days.

Studio Cycle:  Studio cycling gives me an intense cardio workout without the pounding of running, hiking, and step classes. The bikes are a tech wonder where I enter data about myself and get a personal fitness number to measure whether I am in the target zone of white (take a nap), blue, green, yellow, or red (Ferrari). Each of the many different instructors has pushed me to test my limits while pedaling and sweating to great music playlists.

Other Classes:  The Y class schedule is amazing with 12 to 30+ classes offered daily and I am in no danger of running out of things to try. Although I lack motivation for individual workouts, many people lift weights, use fitness machines, swim laps and do all sorts of things apart from organized classes.

Of course the YMCA is not only for seniors. I enjoy the age, race, and fitness diversity of the membership and have been happy to see kids everywhere this summer. I see lots of uber-fit young adults and fondly remember those days.

But the magic of the Southdale Y for me is that it embraces seniors. It is a social club with coffee and newspapers in the lobby. The prequel to yoga class is a noisy affair where new and old friends chat and laugh. The fitness area revolves around one longtime Y member who spends his mornings on a rowing machine and attracts a steady stream of chitchatting visitors. The friendliness is contagious and on my second visit to a noontime water aerobics class, I was invited to join the group that goes out to lunch once a month. The ForeverWell Newsletter mentions things like bingo, hearing screenings, and balance classes—things that you expect to see at a senior center. But it also offers an Al and Alma’s Lake Minnetonka Cruise, a trip to Winona, and an invitation to help landscape the exterior of the building.

This talk of senior fitness and community is a bit schmalzy but I know that my mother’s senior years were lonely. She would have been happier and healthier with daily interactions with other people. I remember when my in-laws moved into an assisted living facility and my father-in-law felt alienated because the residents looked so old. Of course they were no older than he was, but he didn’t see that he was “them.” What I love about the YMCA is that I look at “them” and am comfortable being “them.” I am in the early years of being a senior, but I see respect for every person of every age and every level of health and fitness. I don’t see condescension towards older people or actually towards any people. Everyone is welcomed and appreciated at the Southdale YMCA and I am glad to be part of the Y community.

*******   Links   *******

https://testguessandgo.com/2018/05/14/diabetes-arthritis-and-the-dog/

https://www.silverandfit.com

https://www.ymcamn.org/locations/southdale_ymca

Medicare-Dexcom-Smartphones:  Wait! Just Wait!

On 6/11/18 Medicare announced a change in policy to allow Medicare beneficiaries to use smartphones in conjunction with continuous glucose monitors.

“After a thorough review of the law and our regulations, CMS is announcing that Medicare’s published coverage policy for CGMs will be modified to support the use of CGMs in conjunction with a smartphone, including the important data sharing function they provide for patients and their families.

The Durable Medical Equipment Medicare Administrative Contractors will issue a revised policy article in the near future, at which time the published change will be effective.”

I have not blogged about this change for several reasons. 1) I am a lazy blogger. 2) I was quoted extensively in articles by Diabetes Mine and Diabetes Daily about my reactions to the announcement. 3) Most of my diabetes preaching these days takes place on Facebook. Today I decided to enter the arena with a blogpost because of the chaos on diabetes social media about what this announcement means and when it will be implemented.

Dexcom initiated the confusion with a 6/11/18 press release that states: “With nearly half of adults ages 65 and up using smartphones, Medicare diabetes patients are now able to use the Dexcom Share feature that allows users to share glucose information with up to five loved ones or caregivers.”

The problem is the word “now.” Now is not the near future as stated by CMS. Adding to the confusion is that a definitive policy was not communicated and standardized throughout the Dexcom organization and some Medicare beneficiaries were told by Dexcom reps that they could immediately begin using the G5 Mobile App. 

A couple of Facebook quotes:

“Damnit. Dexcom said it was good to go last night.”

“I called Dexcom support/app & software department again today they checked & confirmed that we could start using it as of June 11.”

“It would help us all if CMS or Dexcom would give a definitive statement about when. There is no hard statement about waiting.”

On top of that, Diatribe (whom I normally consider to be the Gospel of Diabetes) published an article that is not entirely correct. It states: “Like other users, G5 Medicare beneficiaries can now choose to view real-time glucose data on the G5 app only, the receiver only, or both devices.”

Christel Marchand Aprigliano of DPAC who has met extensively with Dexcom and Tandem in regards to the Medicare negotiations responded on Facebook: “The receiver will still be part of the system. It is still required as part of any Medicare contract. The usage of the app will be in addition to the receiver.”

She also stated:

“While I can’t speak for CMS (Who will obviously have the final say), the meeting on Wednesday was that it would be receiver + smart phone. The receiver is durable medical equipment and the modification of language will reflect the addition of smart device (but not the purchase of said smart device).”

The date of implementation for the policy change is somewhat murky. A Dexcom official confirmed with Medicare diabetes advocate, Larry Thomas, that: “It becomes official on June 21. The technical correction notice must be updated in 10 business days from the notice.” Diatribe also wrote: “According to Dexcom, the deadline for the Centers for Medicare and Medicaid Services (CMS) to update the coverage policy is June 21, if not sooner.”

But Christel cautions us that regardless of date: 

“Do NOT download the app until the actual physical ruling has been changed.”

The last quote that I will share is a June 14 Facebook posting by Larry Thomas about his conversation with a Dexcom Medicare representative:

“The old regulations regarding NOT using the G5 app for Medicare patients are still in place and Dexcom representatives are still required and instructed to report you to Medicare if you are using the G5 mobile app until the rules are changed. This means not only will you be back charged if you are not in compliance, but you will possibly lose future coverage for Dexcom CGM supplies in the future i.e. you will become a cash-only patient with Dexcom. These are her words not mine. If you doubt them please call and speak with a representative in the Medicare department at Dexcom. Remember, just because a tech support person or app support person gives you the okay to use the app, it does not waive your responsibility to abide by the written contract you signed in order for you to get coverage by Medicare for the Dexcom CGM system. I have again requested Dexcom to send out an email to all of us affected by this situation to clarify that it’s “not a done deal yet” (again her words not mine) and have also reached out (again) to the media release department at Dexcom to change the media release so that people are not confused by this.”

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What you need to know if your Dexcom G5 is being reimbursed by Medicare:

1)  You are not yet allowed to use the Dexcom G5 Mobile App. You must wait until the revised policy is issued by DME Medicare Administrative Contractors (MAC’s) such as Noridian. If you use your smartphone before this revision is released, you are in violation of Medicare policy and risk losing Medicare reimbursement for your Dexcom G5.

2)  It is highly unlikely that you will be able to your smartphone exclusively without some use of the receiver. “In conjunction” means “with” and “combining” not burying the receiver in a sock drawer. IMO it is best to refrain from sharing your receiver-avoidance intentions on social media until the final CMS policies are released. Don’t give CMS ammunition to contrive stupid roadblocks to reasonable CGM use by Medicare beneficiaries.

3)  Do not call Dexcom at this time. Christel Marchand Aprigliano of DPAC told me: “Tell everyone to wait for the policy change from CMS in writing – Dexcom will put out information when it becomes available. Please kindly also remind them that the customer service department at Dexcom is trying very hard to provide good customer service, but it is not in anyone’s best interest to call – wait for the announcement published by Dexcom on the website (and I’m sure we will be announcing this as well.)”

4)  Nothing about this recent change in policy affects the use of the Tandem X2 insulin pump as a CGM receiver. Although Tandem and Dexcom are in negotiation with CMS, the current policy is that Medicare beneficiaries are forbidden from using their Tandem t:slim X2 pumps as a Dexcom G5 receiver.

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Special thanks to Christel Marchand Aprigliano of DPAC and Larry Thomas, bulldog Medicare diabetes advocate, for giving me permission to share their words.

Note that all bold text in this post is my emphasis and not that of the organization or person being quoted.