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

Living in the Orange:  When Diabetes is Tough

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

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

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

An old dog and an old lady.

But definitely some physical changes that might warrant more insulin.

I am frustrated with my diabetes technology.

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

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

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

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

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

Part 2 of the Story

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

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

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

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

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

When Diabetes Screams for Attention

Tonight I am in Phoenix.

No, that was last week.

Today I am in Minneapolis.

No, that was two months ago.

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

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

But she knows the drill.

Test your blood sugar.

Talk tough.

Take your insulin.

Eat lunch.

Say you’re fine.

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

Sweating.

Shaking.

Terrified.

Your BG is 36.

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

And yesterday it was 48.

And the day before 38.

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

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

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

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

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

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

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

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

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

Look at me! Look at me!

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

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

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

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

I was helpful for nine days.

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

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

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

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

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

A Libre is covered by Medicare under part D prescription benefits.

Freestyle Libre.

Amen.

Diabetes Supplies under Medicare: Hard Work

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So FU Diabetes and Medicare and Dexcom and CCS.

I’ll deal with you next week.

Not FDA Approved

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

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

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

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

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

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

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

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

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

Everything is now fine in Diabetes Land.

I found my Dexcom receiver.

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

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

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

Just another day with Type 1 diabetes.

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

The Last D-Tech

Laddie_Head SquareThe last CGM.

The last pump.

The last D-tech before going on Medicare.

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

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

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

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

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

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

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

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

And fear.

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

In My Diabetes World

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

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

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

IMG_1921

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

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

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

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

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

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

IMG_0731Number Four!  I have been hiking a ton this winter and playing golf at least once a week. Abby the Black Lab has been enjoying two walks a day. My Fitbit is exploding with steps and I have averaged 18,850 steps (8.5 miles) per day for the last 4 weeks. If only the other parts of diabetes care were as easy for me as exercise. I’d be willing to trade 5,000 steps (or even 8,000 steps!) a day to anyone who would cook me delicious, healthy, low-carb dinners.

That’s it for today. Be strong. Be well. Be happy. Keep fighting the good fight and see you around the DOC.

Check It Out!

Laddie_Head SquareIt’s been a while since I’ve shared what I am reading and listening to. In the past couple of days I read one blogpost and listened to two podcast episodes that I think are worth your attention.

At the top of my bookmarks for non-diabetes blogs is a website titled Heart Sisters. This blog is self-described as “All about women and heart disease – our #1 killer – from the unique perspective of CAROLYN THOMAS, a Mayo Clinic-trained women’s health advocate, heart attack survivor, blogger, speaker.”

Currently I do not have heart disease although as a woman in her 60’s with Type 1 diabetes, I know that I am at risk. The appeal of this website for me has less to do with heart disease and more to do with the shared experiences of women (really all people) living with a chronic disease.

On October 17, Thomas published a blogpost titled “How Minimally Disruptive Medicine is happily disrupting health care.” She highlights the Mayo Clinic’s KER (Knowledge & Education Research) team led by Dr. Victor Montori. Dr. Montori is well-known for his discussions of the chronically-ill patient’s “burden of treatment” and is a proponent of eliminating terms such as “non-compliant” and “non-adherent.”

Heart Sisters 1

Those of us with diabetes are experts at recognizing the burden that our care places on our lives. Thomas shares a quote from a 46-year old woman (V. T. Tran interview) whose comments will hit home for many of us:

“There is stuff that I am SUPPOSED to do, and stuff that I actually DO.  If I did everything I am SUPPOSED to do, my life would revolve around doctors and tests and such and there wouldn’t be very much left for living my life.

I strongly urge you to read this blogpost and dream about an ideal world where medical professionals no longer blame patients and instead work towards patient health goals with a secondary emphasis on diagnostic test numbers.

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Juicebox Podcast is an offshoot of the well-known diabetes parenting blog Arden’s Day. In 2007 Scott Benner began sharing life stories after his daughter Arden was diagnosed with Type 1 diabetes at age 2. Scott proudly proclaims that he is a stay-at-home dad and the author of Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad. Never one to shy away from a challenge, Benner began a podcast in early 2015 and named it after the numerous juiceboxes his daughter has consumed to treat low blood sugars.

This weekend while walking the dog, I listened to two Juicebox Podcast episodes which focused on Dexcom. Episode #27 was an interview with Kevin Sayer who is the CEO of Dexcom. Rather than recreate the wheel, I’ll share Scott’s synopsis of the episode: “Dexcom CEO Kevin Sayer talks about the Dexcom/Google collaboration, pump integration, Android and iOS/CGM in the Cloud issues, Medicare, Medicaid, Adhesive concerns…. Sayer was an open book who dished about things that I thought for sure he’d decline to speak about.”

Episode #28 was an interview with Steve Pacelli who is Dexcom’s Executive VP of Strategy & Corporate Development. Once again per Benner: “Just 24 hours after the surprise FDA approval of the Dexcom G5 continuous glucose monitoring system, I spoke with Dexcom EVP Steven Pacelli and asked him all of the questions that were submitted to me by my blog readers and podcast listeners – I even threw in a few of my own. If you’re wondering about Dexcom G5 upgrading, cost, out of pocket, battery life and more?”

Juicebox Podcast 1

Both of these Dexcom interviews were released in August and some of the G5 discussion is a bit dated. A minor point because both conversations are fascinating with insider views of Dexcom’s past, present, and future. I found Sayer’s discussion of the Google/Dexcom collaboration to be particularly interesting with his views on device miniaturization and the possibilities for the Type 2 market.

As an adult with Type 1 diabetes, I am not necessarily the Juicebox Podcast‘s target audience—parents of children with T1. Some of Benner’s interviews focus on parenting issues such as 504 plans/talking with school administrators and I skip those. Many are interviews with other T1 parents sharing their unique stories. I listen to and enjoy those podcasts while giving thanks that I live with Type 1 rather than my children. Finally there are interviews with people such as NASCAR driver Ryan Reed, American Idol contestant Adam Lasher, John Costik of Nightscout, and the two Dexcom executives that are interesting to anyone with a connection to diabetes.

I subscribe to the Jukebox Podcast through iTunes and new episodes are automatically downloaded to my iPhone podcast app. You can also listen to individual episodes through iTunes.

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Summary:

Read this!  How Minimally Disruptive Medicine is happily disrupting health care

Listen to this!  Dexcom CEO Kevin Sayer Talks

Listen to this!  Dexcom G5 Approval with Dexcom EVP Steve Pacelli

The Vibe After Two Months:  Part 3 — Pump Performance

Two and a half weeks ago I surprised myself. I was standing in the pool dodging grandchildren with noodles, inner tubes, and water cannons. Out of nowhere I began to envision the possibility that I might choose to stay with the Animas Vibe when I select my next insulin pump in late 2016. You’re probably thinking “Where in the heck did that come from?” Part 1 of this series was highly critical of the Vibe as a pump/CGM system. Part 2 detailed my frustrations with the klutzy hardware and software integration of the Dexcom G4 into the pump. So how in the world did I get to the point that not only do I not hate the Vibe, I am relatively happy with it.

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Laddie_Head SquareI’ll start with a little history. In late 2012 I left Medtronic for Animas because I wanted upgrade access to the first pump to be released in the USA with a Dexcom integration. I had read a lot about the convoluted menus of the Animas Ping but figured that I would get used to them. Very quickly I figured out that I had greatly underestimated how much I would hate these menus. Over a year later I was still grouchy with my pump decision and frustrated with the constant scrolling, the need to populate each recommended bolus from zero, and the lack of a Back button.

One day a couple months ago it dawned on me that I had become so adept at scrolling and button-pushing on the Ping that I didn’t hate it anymore. I still wondered what the Animas designers had been smoking when they designed the software system…. But I didn’t fight it anymore.

When I received the Vibe in mid-February, it didn’t take long for me to form negative opinions on the CGM integration into the device. At the same time the insulin-delivery functions of the pump were mostly fine and I daily appreciated the jump-to-bolus feature. In mid-March I quit using the Vibe as my CGM and went back to the Dexcom G4 receiver. This simplified my interactions with the Vibe and my satisfaction with the device increased quite a bit. Very importantly, it eliminated the nagging BG calibration alert. No more beeping after every bolus containing a BG number! I no longer had the frustration of the slow-refreshing graphs and I could mostly stay out of the no-man’s-land CGM menu. I began to concentrate on what I liked about the pump rather than my dislikes. At this point I was content that the Vibe was my pump until late 2016.

Let’s go back to the swimming pool. When you have diabetes, going swimming can entail a bunch of complex, usually no-win decisions. Should I risk wearing my pump until I jump in the water and what if I forget to take it off? Should I take some of my basal ahead of time? How long can I go without my pump and how much basal did I miss? What if someone knocks my pump off the table or steals it out of my tote bag? Using the Vibe allowed me to just keep using the pump in the water and not worry about diabetes issues. I could wear my swimsuit for several hours and be as relaxed as everyone else. (Although the Ping was also waterproof, I didn’t spend as much time in the pool as I do now and anticipate doing in future years.)

So all of a sudden I was standing in the pool and thinking that not only was I content with the Vibe now, I could see selecting it for my next pump in late 2016. Do I think it is the best pump ever? Absolutely not. But the menus are adequate, the pump is sturdy, and I really pump_animas_vibelike the fact that it is waterproof. Although I might not choose to use my CGM very often with the Vibe, it is a nice back-up option for times when I don’t want to carry the Dexcom receiver. (This point will be moot once the Dex G5 is released because a receiver won’t be required and it won’t be compatible with the Vibe.)

Would I sign a contract now for the Vibe in 2016? No. But because I will be a few months shy of Medicare when I make my next pump decision, the Omnipod and Snap will be off the table unless Medicare coverage changes. It is unlikely that I will leave Dexcom for the Medtronic CGM, so that essentially takes the newer Medtronic pumps out of contention. (At the same time I was super impressed when a got a chance to see the Medtronic 640G at the UnConference in March.) Accu-Chek is not a good fit for me and I refuse to use a tubed pump that requires a remote controller. So it will be the Animas Vibe versus Tandem (and maybe Medtronic?). Let the battles begin!

One thing that I have not talked much about in this post is the decision to leave the Ping to upgrade to the Vibe. Many Animas pumpers (or parents of pumpers) rely on the meter remote of the Ping and the lack of one becomes a deal breaker for the Vibe. I hated the remote and it was relegated to a dark closet several years ago. In my book everything about the Vibe is equal to or better than the Ping.

At the bottom of the post, I have attached a link to a sheet that I received from Animas highlighting the differences between the Vibe and the Ping. A lot of the changes relate to the addition of the CGM functions. The biggie for me is the one-button bolus population. I also like the ability to see my IOB with one button push. There are other menu changes that aren’t important to me and I still goof up with some of the new navigation arrows in the Setup, Status, and History menus. I have no interest in the Food list which is now in the pump, but others might like that feature.

In summary, I am mostly happy with the Vibe. For me it is a sturdy, reliable, waterproof pump that is not overly aggravating when I don’t activate the CGM functions. At the same time I believe that Animas missed the opportunity to design and release a  pump which could have hit a home run in the diabetes tech world. I have no idea if there are new pumps in the pipeline at Animas, but I hope so. As we see feature-rich pumps such as the Medtronic 640G and offerings from Tandem, Assante, and Omnipod hit the market, it is my opinion that the Vibe longterm will have a shrinking share of the insulin pump market.

Click this link to see a PDF scan of the Animas Vibe Features Guide In comparison to the OneTouch Ping insulin pump: Animas Vibe_Ping

Midnight Two and Five

Laddie_Head SquareThe big thing around the DOC these days is the NY Times Op-Docs feature titled “Midnight Three & Six.” This twelve minute video was filmed by Joe Callander and funded by the Sundance Institute. In remarks accompanying the film, Callander begins the story as follows:

For the past eight years, the Chamberlain family in Fort Worth, Tex., has been coping with a nightmare all parents fear: In 2006, their daughter, Grace, was given a diagnosis of a life-threatening disease. Grace has Type 1 diabetes, for which there is no cure. Now 15 years old, she has endured approximately 34,000 blood tests, 5,550 shots and 1,660 medical tubing injections to keep her alive.

Later he writes:

But I was most struck by the realities of the family’s daily routine. Grace’s mother …. told me about nights punctuated by alarms to get up and check her daughter’s blood sugar, at “midnight, 3 and 6.” That timetable became my structuring device for making this film.

By Sunday afternoon there were 165 comments on the documentary. Some claimed that the Chamberlain’s family mirrored their life perfectly. Others labeled it as an overly melodramatic depiction of Type 1 diabetes and criticized the parents for how they care for their daughter. My guess is that all of the comments have some merit and mirror fragments of life with Type 1. To put it all in perspective, you should read the comment by Grace’s father who defends/explains his family’s experience and concludes that the film is an artistic peek at one family’s life with diabetes, not a factual textbook. He writes:

finally, please remember that a very talented, creative film maker asked us for a behind the scenes look at our family situation with T1D; then , he crafted a 12 minute film to encapsulate his subject matter in an artistic way. The film is getting a huge response, and we are happy about that…including the disagreements!

If you haven’t seen the film, watch it here. Be prepared to be disturbed whether or not you agree with the depiction of Type 1 diabetes. If you have time, read the comments.

The purpose of this blogpost is not to give my views of the documentary, but rather to use the title “Midnight Three & Six” as a starting point to discuss how often Type 1 diabetes and a good night’s sleep are incompatible.

I have had Type 1 since 1976—diagnosed at age 24. Parents were never involved in my T1 life and no alarms were ever set to test my blood sugar. Of course I had many years of diabetes before I even had a home BG meter. I also lived with diabetes before the Internet and as a somewhat ignorant young adult never considered that I might not wake up in the morning.

Although they were not an every night occurrence, I have vivd memories of horrific lows in the middle of the night. Waking up sweaty, shaky, and disoriented. Staggering downstairs for orange juice followed by multiple bowls of Frosted Flakes and milk. When I was lucky, I was able to find a dry nightgown before returning to bed, but it was always a struggle to avoid the sweat-drenched tangle of sheets where I had previously slept. I remember the freezing cold that permeated my bones and the inability to get warm even with the electric blanket on high. I can still appreciate the buzz as sugar raced through my body reviving my numb limbs, lips and brain. Although I probably woke the next morning with crazy high numbers, I have no memories of that.

As I aged, it became rare to sleep through the night without at least one trip to the bathroom. I began testing my BG when I got up. If it was low, I’d go back to bed with a couple of Werther’s candies in my mouth. It was many years before it became part of my Sleepy Dwarfwheelhouse to take an injection to bring down a high. I never woke at night without diabetes being the first thing on my mind.

I now live with a CGM. You would think that this watchdog would enable me to sleep soundly, but sometimes I think it is the exact opposite. There are many nights that the Dexcom is on the Midnight 3 & 6 schedule along with Grace’s parents, or more accurately for me, the Midnight 2 & 5 shift. I struggle with eating too many snacks through the evening. Sometimes it’s junk food. Other times by trying to avoid carbs, I eat things like nuts and cheese. It doesn’t matter which. The pattern is to go low early in the night from too much insulin and then go high at 2:00AM. Although I try to be conservative with corrections, usually the highs are followed by lows in the predawn hours. My G4 definitely earns it keep by alerting me to each one of these out-of-range numbers. Since I am confessing my sins, I might as well admit that I eat glucose tabs and dose insulin based on Dex numbers all night long.

On Friday after being frustrated with the current sensor, I ripped it off at bedtime and decided to splurge with an uninterrupted night of sleep. I had eaten nothing since an early supper, had no IOB, and felt confident that nothing too disastrous would happen. I think that it was the first night in two years that I had gone to bed without a functioning CGM (except for a few times when my transmitter died and I had to wait for a replacement).

I slept marvelously. No, I slept marvelously until 5:56AM when my Animas Ping starting singing Für Elise signaling a pump alarm. It turned out that I had not pushed any buttons for 12 hours and had triggered the Auto Off safety feature. A button push or two and insulin delivery resumed. Back to sleep. Back to sleep until 6:12AM when a twinkle alert indicated that my pump had lost prime. (Losing prime is an extremely annoying problem with Animas pumps and requires that you unhook your infusion set and prime a few units of insulin to restore pressure in the insulin delivery system.) A trip to the bathroom, bright lights, my infusion set reattached, and I was awake for the day.

Although my diabetes control is “good,” the fact that I rarely have a night without Dexcom alarms would indicate that I have problems that need to be addressed. I have a list of things that could be improved. In the meantime, if there are any parents who would like to take the Midnight 2 & 5 shift and start testing my BG, dosing insulin and giving juice as needed, I’m taking applications….