A Tandem Vacation

Is it back to the future or forward to the past? 

I’m not quite sure.

What I do know is that this month is my two-year anniversary using a Tandem insulin pump and I just went back to using my Animas Vibe. I am hoping that an older, simpler pump will ease my navigation through the current dark clouds of my Type 1 diabetes. I wrote a blogpost in late November about my diabetes life as a country music ballad and things haven’t changed much. My elderly dog is recovering well from pneumonia but struggling to move around due to arthritis and an injured foot. The cold and cloudiness of late fall continue to trap me in gloom and icy streets prevent neighborhood walks. I have been in an extended funk where my diabetes doesn’t follow the expectations of “If I do A, then B will happen.” A lot of time I do A and seemingly nothing happens. Is it the pump? Is it the insulin? Is it my behavior? Is it one of Diatribe’s 42 factors that can impact blood sugar? I am burdened by diabetes technology that doesn’t give me sufficient control over intrusive beeps and sirens.

Many of you know that when I get frustrated with my D-Life, I try new tools with the conviction that there is a solution to BG frustrations. I have added Lantus as an adjunct to pump therapy with the Untethered Regimen. I have adopted low carb diets and reset my life with a month of Whole 30. I have changed types of insulin and models of infusion sets. Wil DuBois of Diabetes Mine wrote an article this week titled “To Pump or Not to Pump with Diabetes?” and shared his feelings about the benefits of changing up your D-regimen: 

“I find that any time I change from one tool to another, I do better. If I changed every two months, I’d probably stay in control. I think it’s because change makes you focus. That, or diabetes is an intelligent alien parasite that can be caught off-guard only for a short time.”

But back to the subject of this post. I am using my Animas Vibe in place of my Tandem t:slim X2. I have always relied on the Vibe as a backup pump so it is not a bad idea to road test it after two years in the closet. I figured that I would quickly miss the X2 but have instead discovered that I really like this old pump.

I was concerned that going back to scrolling for carb and BG numbers would be horrible but in many ways it is easier than using a touchscreen and navigating through multiple “Are you sure?” screens. I really appreciate the immediate bolus delivery of the Vibe. With Animas, I program the bolus, it whirrs, and delivers insulin before I can get the pump back in my pocket. With Tandem, I program the bolus, it delays for a while, micro-boluses, and eventually finishes with a confirmatory vibrate a minute or two or three later. The Animas clip is a delight with its easy attachment and actually holds the pump securely on my waistband. Temporary basals are simple to enter and a temp basal of zero does not result in an annoying warning alert several minutes later. The Combo Bolus function remembers my last setting rather than requiring a recreation of the split and duration each time. My arthritic hands are having an easier time with the Vibe buttons than with the increasingly stiff T-button on my X2.

There are lots of wonderful things about Tandem pumps but I have been one of the unlucky people who gets occlusion alarms. Most users don’t get them. The vast majority of the alarms are false. I just hit “Resume Insulin” and go on my way. Lately I have had a couple of alarms that actually required replacement of the infusion set and/or cartridge. I have done extensive troubleshooting with Tandem over the years and am on my 4th pump. Only one of those pumps did not give me occlusion alarms and it unfortunately had a defective T-button. I never had occlusions in 12 years of pumping with Medtronic and Animas.

I am tired of troubleshooting. I sometimes experience one or two occlusion alarms a week and then go a while without them. But after two years of alarms, I think about occlusions almost every time I bolus. I average 8-9 boluses per day and that is a lot of thinking about occlusions. I am tired of holding the pump with the tubing extended post-bolus to prevent occlusions. I am tired of feeling guilty for stubbornly refusing to use the Tandem case and for not changing my cartridge every 3 days. I have a low TDD of insulin and an every 3-day cartridge change results in wasting as much insulin as I use. I do replace my infusion set every 2 days.

Longterm I know that I will eventually be back to Tandem. I am probably just being a pouty and whiny problem child. Despite fewer alarms and intrusions into my life, the Vibe has not cured my diabetes but I am doing better. I am committed to Dexcom and thus don’t envision switching back to Medtronic. I am super excited about getting access to the Dexcom G6 and Basal IQ; as someone on Medicare, that should happen in the spring. Hopefully the benefits of Basal IQ and eventually Control IQ will outweigh the insulin delivery problems. An Animas pump is not a longterm option. Johnson & Johnson abandoned the pump market and there is no customer support for my out-of-warranty Vibe. If it quits working or the case breaks, I am done. Fortunately I have a lot of supplies and was recently given enough reservoirs to last for several years. I can use Tandem infusion sets by substituting the t:lock tubing with luer lock tubing.

I think highly of Tandem and have always had good customer service. Until starting to use the t:slim X2, I was never a problem child with diabetes tech and continue to believe that there is something wrong with an insulin pump that frequently quits delivering insulin. Is it the design of the pump? Is it my low insulin use? Is it random bad luck? Am I at fault? I don’t know and am at a point as Gone with the Wind’s Rhett Butler would say: “Frankly, my dear, I don’t give a damn.”

Diabetes Country Ballad: One of THOSE Posts

Diabetes Awareness Month is not over so I guess I am allowed to  post a blood and gore photo. The bleeding on my belly was much worse than the tissue shows, so just envision 10x the blood of the photo. Oh let’s just be outrageous and imagine 100x the blood! It is still November and I can b*tch about diabetes and the frustrations of dealing with my D-tech. I can be strong on the outside and be sad inside. It is my 42nd November with diabetes and I can do whatever I darn well please.

Today was a weird day and it ended up being a perfect 12-hour basal test. 

My dog Abby had surgery two months ago for a condition called “larangeal paralysis” for which the poster child is elderly Labrador retrievers. The biggest risk of this surgery is aspiration pneumonia. I knew that Abby was sick yesterday and early this morning her lethargy and 103.3 temperature sent us to the emergency vet. She is currently in doggie intensive care inside an oxygen tent with an IV for fluids and antibiotics. We have chosen to treat this episode of pneumonia knowing that we won’t treat again. 

But I didn’t get breakfast.

Then I had previously promised to take care of the grandchildren today. I’m not quite sure why the older ones didn’t have school, but they didn’t. I could have canceled, but since Abby was in the dog hospital, I picked up the kids and we came to my house for Christmas crafts, game time, and doing our best to keep 18-month year old Natalie off of the stairs. I fed the kids lunch but didn’t get around to eating myself.

No lunch.

I drove the kids home mid-afternoon and then stopped at Costco on the way home. I got home at about 5:00 and my BG was at close to 100 after starting the day at 80-ish. Over the next 2 hours, nothing much happened. So a perfect basal test. A 20-point rise over 12 hours is testament to great basal rates and I was kinda feelin’ okay about that.

But then.

I bolused 32g carbs for the Whole 30 stuffed pepper I was having for dinner. The hubby hates dinners like this but he is out of town. 

Bolus. Tandem pump alarms for an occlusion alarm. Ugh! My TruSteel site was a little sore this afternoon so I changed out the site but not the tubing or cartridge. Tried the bolus again. Nope! Another occlusion alarm. 

Although I am a Tandem “doesn’t follow the rules” girl, I changed out both the cartridge and the infusion set. I tried to pull the 100+ units of insulin from the previous cartridge but it was mostly bubbles and I just tossed it. When I pulled out the TruSteel set, I got gobs of blood. My bathroom countertop shows the riffraff of my diabetes debris.

New infusion set, new cartridge, and new insulin. I bolused again for the stuffed pepper. 

Last time I looked at my CGM, it was 139 with a slanted arrow up. 

Remember my BG was about 100 at 6:23pm. 

So my daytime basals are good as my BG only rose 20 points over 12 hours. But my diabetes tech failed me: both the infusion site and the finicky occlusion alarms of my Tandem pump. I have double-bolused for dinner and my BG is still rising. Well, actually I tripled or quadrupled bolused but the pump alarmed on the first attempts.

It is now after 8:00pm and my BG is still rising. I am hungry for dinner but won’t eat until I am convinced that my infusion site, pump, and insulin are functioning properly.

It is now 9:00pm and the numbers are not going down.

Sometimes the hardest part of diabetes is that when you do it right, it does you wrong. 

A country music ballad of…

Betrayal, Frustration, and Sadness.

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Tuesday morning note: Abby is home and doing well.

Type 1 Diabetes and my Medicare Drug Plan

There is nothing special about today’s blogpost. It is just my experience choosing a new Medicare Part D drug plan. My only advice to you is to consider what you require in a drug plan and what the financial ramifications are. Don’t assume that what you used in 2018 is your best choice for 2019.

I now understand one way that Medicare drug plans make lots of money. I am only in my second year of Medicare and it is obvious that it would be easier to stay with what I am doing rather than make a change is logical and financially-expedient. Inertia. Yeah, it’s easier to do nothing than to do something. It can be laziness or just comfort in living with what you know. But you have to remember that doing nothing is a decision and that decision may not be the best decision.

My current drug plan has worked well since I went on Medicare in the spring of 2017. But I have recently started taking an arthritis drug that is not part of that plan’s formulary. It is not a hugely expensive drug; it is just a lesser-prescribed anti-inflammatory. I have received an exception-to-formulary approval for the medicine through 2019 but the monthly co-pay is almost as much as my monthly premium cost. 

So I have wisely gotten off my duff and gone to the Medicare Find-a-Plan website to compare 2019 Part D plans available in my area. I entered my zip code, answered some basic questions, and listed the drugs that I take. I only take 3 drugs under my Part D plan and it didn’t take long to enter the names and dosages. If you have a long list, you can save your drugs to a password-protected drug ID so that you don’t have to enter them every time you visit the website.

I entered my desired pharmacies and selected the option to look at drug plans. You can also use this option to compare Advantage plans.

The wisdom of examining my 2019 choices was immediately apparent. Having entered Walgreens, CVS, and mail order as choices, the cheapest option combining premiums, deductibles, and drug costs was $231 for CVS mail order and $233 for CVS retail. The tenth cheapest plan would be almost $900! Staying with my current plan would be almost $700. Formulary is the name-of-the-game in choosing a Medicare drug plan….

Sometimes money is not the only decision-making factor in choosing a drug plan. As mentioned above, my cheapest drug plan option for 2019 would involve switching to CVS and I have three reasons for wanting to stay with Walgreens.

One, I have used Walgreens for most of my adult life. It has always worked well and my philosophy is “if it ain’t broke, don’t fix it.”

Two, as someone who uses an insulin pump, my insulin is covered under Medicare Part B rather than through my drug plan. The savings are huge because Medicare pays 80% of the cost of my insulin and my Medigap policy pays the remaining 20% leaving me with no out-of-pocket cost for insulin. Due to Medicare regulations and unawareness of this coverage by many pharmacies, it can be difficult to establish and maintain Part B insulin coverage. Before I started Medicare, I was advised by several Type 1 friends that Walgreens and its national Medicare department is one of the best pharmacies for setting up Part B insulin. I have online diabetes friends who get their Part B insulin successfully from CVS, Krogers, and other pharmacy chains, but once again for me “if it ain’t broke, don’t fix it.” I could probably get Part B insulin at Walgreens and other prescriptions at CVS, but I prefer having my prescriptions with one pharmacy. Convenience for me and I think that the occasional glitches in receiving Part B insulin are more easily resolved because I am well-known at my local pharmacy.

Three, I am a snowbird and leave the cold and snow of Minnesota in late December. The idea of transferring my prescriptions in 2019 to CVS through a pharmacy in Arizona seems overly complicated. I am willing to pay a premium to avoid the potential problems of the switch.

I am mostly sure of the drug plan that I am selecting for 2019. It only has two stars out of five stars and at Amazon that might scare me. But my previous Part D plan only had two stars and it was fine. I am lucky that I do not take expensive drugs and even luckier that I do not pay for insulin through Part D. But even still, a wrong part D plan could be an expensive mistake. If I do nothing, I will be automatically enrolled in my previous plan and that would be an expensive default. FYI I do not have to cancel the old plan; that will happen automatically when I I enroll in a new plan.

This blogpost is certainly not a “how-to” post. However, it is a reminder that if you are on Medicare, don’t assume that what you did in 2018 is the best choice for 2019. I’ve gotten off my duff. Be sure that you do the same. You have until December 7 to make a change or confirm that your current plan is still your best option.

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

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.

Living on Planet Dexcom

Starting with the Dexcom G4  released in 2012, I have bolused insulin based on my CGM. Although the G4 was not FDA-approved for insulin dosing, I was comfortable doing so “sometimes, in certain circumstances, and within certain guidelines.” That quote comes from a 2013 blogpost titled “To Dose or Not to Dose” and explains that I mostly trusted the Dex but averaged 8 fingersticks per day.

Fast forward 5 years. I regularly dose insulin off my Dexcom CGM and only average 4 meter tests per day. That average reflects sensor day 1 where I might test 8 times and other days where I may only test 2-3 times. The Dexcom G5 is somewhat more accurate than the algorithm of the original G4, but the difference is only a couple MARD points and not a huge statistical variation.

So what has changed that I have eliminated at least 4 meter tests per day?

What has changed is Me. 

I have 10 years of CGM usage under my belt. The early years of Medtronic SofSensors were rocky with a huge improvement when I moved to the Dexcom 7+. The 7+ was reliable for trends but I don’t remember trusting it enough to guide my bolusing decisions. With the mostly reliable G4 numbers, I frankly just became lazy about using my BG meter. I had good insurance with no need to ration test strips and no issue poking holes in my fingers. I was just lazy and welcomed a small reprieve from a few daily diabetes tasks. Before I knew it, the laziness turned into a habit. It was initially a guilty habit but over time CGM reliance became entrenched in my diabetes decision-making. 

And guess what. It didn’t kill me! And now it is FDA-approved.

Lately I have been frustrated with inconsistencies between my meter and my Dexcom numbers. It drives me crazy. I have always had issues with Dex sensors reading low. As I increasingly target normal-ish BG numbers, the Dex low tendency often results in alarms for lows that aren’t lows. Dexcom screams 65; meter says 85. Maybe I calibrate and Dex goes up to 75 before dropping back down to the 60’s. I know that numbers showing up after calibrations are determined by “The Algorithm” but sometimes if I enter 85, I just want the receiver to say 85. 

My perfecto personality overreacts to diabetes numbers. When my meter and CGM feud, I calibrate too often. I over-manage blood sugars. I get lows and highs as I target perfection and my mental health meter explodes. 

What do I do?

Do I start testing 8-12 times a day like in the old days? Do I donate the CGM to Goodwill?

Heck No!

I just move to Planet Dexcom and go with the flow of CGM numbers. I test less.

Although Dr. Bernstein might disagree, I believe that when you are 66 years old with 42 years of diabetes under your belt, 20 or 30 points here and there probably doesn’t matter a lot. Especially if I have a flatter CGM tracing because of fewer peaks and valleys. By not obsessively using my meter, I might miss some large Dexcom/meter discrepancies. At the same time, it hasn’t killed me yet. I am mostly hypo unaware. But because I have had so few catastrophic lows since the introduction of Dexcom G4, I have some confidence that if I pay attention to my body and my diabetes devices, I am somewhat protected from incapacitating lows.

Remember. It hasn’t killed me yet.

Note: Because I am on Medicare, I am using the Dexcom G5 and it will be a while before I have access to the G6. I find it interesting that many of the early-users of the G6 which requires no calibration are celebrating its accuracy. Simultaneously they are claiming that they are not using their BG meter. So actually they don’t know how accurate it is. They are living on Planet Dexcom and finding that it is a relatively safe and happy place to be.

There will come a day when blood glucose meters go away and everyone with diabetes uses some type of continuous glucose meter. We’ll live on

Planet Dexcom or

Planet Libre or

Planet Medtronic or

Planet Eversense or

Some other CGM planet in the diabetes universe.

Relatively safe and happy.