Winning the Battle with Tandem Occlusion Alarms

I began using the Tandem t:slim X2 in mid-December and wrote a product review in February. At that point I was frustrated with what I called #FakeNews occlusion alarms. I described the situation:

“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.”

I mentioned that I had tried several recommendations from both Tandem reps and t:slim users on Facebook. Because I was using cartridges for more that the recommended 3 days, I began changing them more frequently. Instead of reducing the number of occlusion alarms, more frequent changes with less insulin in the cartridge resulted in more alarms. I tried carrying my pump in a Spibelt and then a Flipbelt as one D-friend recommended. I found the belts uncomfortable for everyday use and was quick to abandon them when I got an occlusion alarm wearing one.

A Tandem tech gave me a call and indicated that he is convinced that these occlusions happen because of temperature changes. He wanted me to start using a Tandem case to protect the pump from temperature changes when it was taken out of my pocket or Spibelt. He promised to send me a case without the clip so that I could carry the pump in my pocket. Meanwhile I started using the dreaded t:clip case which was bulky and ill-balanced and frequently fell off my waistband. I used the case for a week and hated it despite having no occlusion alarms. I took it off for a day hike and immediately had another lunchtime occlusion alarm.

Very quickly I reached the point that I was going to wear the pump the way I wanted to and occlusion alarms be damned. I wasn’t going to use an uncomfortable waist pack. I wasn’t going to use the t:clip case which ruined the elegant size and looks of the pump. I wasn’t going to change the cartridge every 3 days and waste a ton of time and insulin doing so.

Meanwhile I recalled that both Sarah “Sugabetic” and Kerri Sparling had written about a metal clip that could be attached directly to the pump. I reviewed their blogposts and ordered a Nite Ize Hip Clip from Amazon. I was a little spooked about attaching something directly to the pump, but went ahead anyway. For the first time I felt that I finally had a solution to carrying my X2 that would take it out of my pocket but keep the sleek lines of the pump intact.

I started using the Hip Clip on February 15 and made it 17 days before I had an alarm during a mealtime bolus. Although the pump was on my waistband, it looked as though the tubing was bent over on itself. Not exactly kinked but somewhat bent. I straightened the tubing and resumed insulin with no problems. As of today I have made it 32 days with only the one occlusion alarm.

Meanwhile I have not had to use the bulky Tandem case. I have not had to wear a Spibelt or Flipbelt except when I choose to at the gym. I have continued to use each cartridge well past the 3-day recommendation. (I change the infusion set every 2-3 days, just not the cartridge or tubing.) I have been happy wearing the pump on my waistband and been particularly happy that the pump retains it beauty and small size.

I am wearing and using the pump the way I want to wear it and the way I want to use it.

What has been my solution?

  1. I wear the pump with the Hip Clip clipped to my waistband most of the time. I try to make sure that there is no pressure on the tubing to cause it to bend near the pump and tubing connector.
  2. If I carry it in my pocket (which is easy to do because the clip is so small), I make sure that during boluses I keep the tubing near the pump and pigtail straight.

This solution seems to work for me, but will it work for others experiencing occlusion alarms? Are those of us experiencing the alarms having them for the same reason? I can share my profile: low average daily dose of insulin (<20 units), thin-average build, using manually-inserted Comfort Short infusion sets, carrying the pump in pocket with no case, using each cartridge for longer than 3 days. From Facebook discussions I don’t find a lot of overlap with my profile compared to others. I don’t even know what percentage of t:slim and X2 users experience occlusions because discussions about occlusions primarily attract users having the problem. Many Tandem pumpers report having no occlusion alarms. Some pumpers who report occlusion alarms believe that they are really having occlusions and have been helped by switching type of infusion sets. But that is not the case for many of us.

So for now I have learned to live with and mostly avoid occlusion alarms with my Tandem t:slim X2. IMO there is a flaw somewhere in the design of this pump system because I strongly believe that I should be able to carry my pump in my pocket without alarms. Tandem also thinks so because this screenshot of the t:slim X2 webpage shows a pumper pulling an uncased pump out of her pocket.

On March 8, 2017 Tandem announced that it will soon implement infusion sets and cartridges using a newly-designed tubing connector. The news release states:  “The new design reduces the time required to fill the infusion set tubing by approximately 30 seconds and reduces the amount of insulin used in the process by approximately four and a half units.” There is no mention that the t:lock Connector will reduce false occlusion alarms and it probably won’t, but a girl can always keep her fingers crossed….

In summary, I seem to have figured out how to avoid occlusion alarms on my Tandem pump. Maybe it is the tubing; maybe it is the temperature issue. Whatever. For the most part I’m just not thinking about it. And that’s a good thing.

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Please note that this post only reflects my personal experiences. Be sure to talk with a Tandem representative and read as many reviews as possible if you are in the market for a new pump.

A Review of the Tandem t:slim X2

Laddie_Head SquareI started using the Tandem t:slim X2 insulin pump on December 13 and this review is long overdue. After 2 months, I am mostly happy with the pump. I am comfortable navigating through the menus and have learned a few shortcuts. I like the touchscreen and the “modern” look of the pump. I like knowing that I will be able to add new features to my pump with software updates. At the same time I am annoyed with almost daily alerts about one thing or another. Most significantly, I am frustrated with occlusion alarms which I never experienced with previous pumps.

The Good Things

I like the touchscreen and being able to enter numbers for carbs and BG levels rather than scrolling up and down.

I like the looks and size of the X2.

I like the ability to turn off the screen to preserve battery life. I like the ability to go backwards through menus and tap the “T” to return to the home screen.

I like being able to fine tune settings. For example with Active Insulin Time, my early Medtronic pumps restricted changes to hours. 3 hours seemed too short; 4 hours seemed too long. Then with Animas, I could select 3-1/2 hours or 4 hours and neither seemed perfect. Now with Tandem, I am using 3-3/4 hours and could even select 3 hours and 39 minutes.

I like the ease of setting Site Reminders on my X2. This wasn’t a feature that I particularly missed on previous pumps, but now that I have it, I use it often.

I like that the reservoir icon remains red after I clear the customizable low reservoir alert.

I like that I can read the pump screen in bright sunlight when hiking. Sometimes I have to take off my sunglasses to read it, but it is much better than my Animas pump screens which were totally unreadable.

I like that Tandem has attempted to create a pump that is contemporary and has worked to creatively meet the needs of insulin users.

I like that I will be able to download software updates to add new features such as CGM integration to my X2 as they are released by Tandem. My fingers are crossed that these updates will be allowed under Medicare rules.

I really like this pump.

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The Annoying Things

I find filling the reservoir to be an overly complex and time-consuming process. It is like a “black hole” because I can’t see the insulin in the reservoir or troubleshoot air bubbles. I dislike that the icon on the home screen does not give me a more exact estimate for the number of remaining units of insulin. I can start with a syringe of 250 units and the pump registers 180+ units. After delivering 10 units of insulin (that’s half a day for me), it displays units of insulin rounding to the nearest 5 units. Below 40 units it begins to show specific units. I seem to “lose” more than the 45 (!) units that Tandem indicates as normal.

There are alerts which interrupt me on almost a daily basis. I use temp basals of “0” often for 30-60 minutes when I am moderately low and don’t want to eat. Unfortunately the X2 alerts 2 minutes later to indicate that my basal rate is less than half of my normal basal rate. Well, duh! That’s what I programmed. I suspect the alert is actually a result of a sensor, but IMO software should dismiss the alert if the basal change had been programmed.

I dislike the pigtail connection between the cartridge and the tubing. It tends to stick out and cause tubing to hang out of my clothes.

The t:clip vertical case that accompanies the X2 is bulky and poorly balanced. My guess is that it was designed by men who wear it on a belt. When I clip it to my waistband, the pump is top-heavy and leans forward resulting in an odd bulge in my clothing. If I bend over, it frequently falls off. Rumor is that a new case will be released soon.

Things to Which I am Indifferent

I have never wanted a rechargeable pump but it doesn’t bother me. The X2 charges quickly and does not require a proprietary charger. I can even charge it in my car. So it’s fine.

A lot of people like the way that basal and bolus settings are programmed together in blocks of time on the t:slim. So far I don’t find much benefit doing it that way but I don’t care.

The X2 holds 300 units of insulin. I was fine with 180-200 unit reservoirs, but it’s easy to fill the cartridge partway.

User Error Problems

Some of my issues with the X2 have been due to “user error” and are resolving as I become used to the differences between the X2 and my previous pumps.

The most common error that I make is not resuming insulin after filling the cannula on new infusion sets. I can’t quite remember how it was handled with Animas, but I never had the problem of not resuming insulin. With the X2 I have to wade through a couple of screens like “Stopping Fill” and “Test BG in 1-2 hours” before I get to the option of “Resume Insulin.” Many times I have returned the pump to my pocket before those extra screens. Thankfully I always get an alarm that the pump is not delivering insulin and can fix the problem. I am getting better at slowing down and not forgetting to resume insulin, but occasionally I still mess up.

Another annoyance is if I accidentally touch Bolus on the home screen (and this is easy to do) and don’t clear it, I will get an alert for an incomplete bolus although I haven’t entered any data. The alert will not clear until I go back into the pump, clear the alert, and back out of the bolus feature. Once again this is happening less often as I become more focused when handling the pump with an active screen and being sure to push the top button to turn off the display.

I used Animas pumps for the last 4 years and bolus insulin is infused quickly and immediately. Tandem pumps use a patented “Micro-Delivery” process and can take a couple of minutes to infuse a bolus. More than once I have pulled the same trick that used to mess me up with Medtronic pumps. I bolus for my breakfast while getting dressed. Forgetting that I programmed a bolus a minute ago, I unhook my pump to thread the tubing through the hole in my pocket or even to take a shower. Meanwhile insulin is dripping out and I have no way of knowing how much of my bolus I missed. Once again I am working hard to break this habit.

Occlusion Alarms – The Elephant in the Room

I have used an insulin pump since 2005, first Medtronic and then Animas. In all of that time I had at most 2 or 3 occlusion alarms. If you want to add “loss of prime” alerts on my Animas Ping, maybe you could add 5 more alarms. In 12 years I estimate that I had a problem with insulin delivery 7-8 times. Less than once a year. I cracked pump cases more times than I can count, but I never had a pump replaced because it did not deliver insulin.

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.fullsizeoutput_1c6b

Before I go any farther, I must admit that I do not change my cartridges every 3 days as recommended. (I do change infusion sets every 2-3 days.) My first occlusions happened when my cartridges had been in use for 8, 9, and 7 days. So I shortened my cartridge use and had occlusion alarms at cartridge ages of 2, 5, 7, and 1 day. I have only used one cartridge without an occlusion alarm. FYI my total daily insulin dose ranges from 13 units to 26 units and averages 18-20 units. I regularly used reservoirs for 8 days with both Medtronic and Animas and never had a problem.

I have been in contact with both people at Tandem and “experts” in the diabetes online community and have considered every suggestion. I have changed cartridges more frequently. I have used a Spibelt and a Flipbelt. I have used the awkward Tandem case because Tandem techs think it is a temperature issue. (I did learn that the case traps in heat and your insulin goes bad in about 5 days.) I have carried the pump in my pocket and worn it on my waistband. I am 100% convinced that my manually inserted Comfort Shorts (Silhouettes) are not the problem. The occlusion alarms have not correlated with site age and have randomly occurred at site ages of 1, 2, and 3 days. I have had no failed or kinked sites and have used these sets for 12 years with no issues. A Tandem tech assured me that the pigtail design of the cartridge/tubing is not at fault because an internal coil protects it from kinking.

Replacing the pump has not yet been requested by me or suggested by anyone at Tandem. I am currently wearing the pump on my waistband using a Nite Ize hip clip attached directly to the pump and I will see if I can make it 2 weeks without an occlusion alarm. (Thanks Sarah Sugabetic and Kerri Sparling.) My record is 13 days; so far I’m on Day 6.

One thing I must give kudos to Tandem on is that when I get an occlusion alarm during a bolus, it does let me know how much of the bolus was delivered so that I can reprogram the rest after clearing the alarm.

Everyone at Tandem has been respectful and concerned. I sit here in the middle of this experience wondering “What separates the many people who never have occlusion alarms from those of us who are plagued with them?” For me these alarms are #FakeNews and #AlternativeFacts and not once have I seen a kink in my tubing or needed to change out an infusion set or cartridge to resolve the issue.

Conclusion

I like my X2 and do not regret the purchase. I wrote extensively about why I chose this pump and I would not make a different decision today.

At the same time I am conflicted about wholeheartedly recommending this pump to others. How can I recommend a pump that averages a once-a-week stoppage of insulin for seemingly no reason? I admit that I don’t follow all of the rules, but in general I am a conscientious PWD and am doing nothing differently than I did with Medtronic and Animas. Because I have always heard the occlusion alarms, I have been able to restart insulin delivery immediately and have suffered no ill effects from these events.

I delayed writing this pump review because of the occlusion alarms. My hope has been that every “fix” would resolve the issue and I could write a glowingly positive review of the X2. I want to love this pump and I want Tandem to grow and be a successful pump company. As I said before, I really like this pump.

Maybe the hip clip will be the solution.

If not, I will probably argue for a replacement pump as the next step. At this point I am confident that I will not be abandoned by Tandem.

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Please note that this review only reflects my personal experiences. Many users do not experience occlusion alarms with the t:slim X2. Others had these problems with other brands of pumps and don’t with Tandem. Be sure to talk with your medical team, contact a Tandem representative, and read as many reviews as possible if you are in the market for a new insulin pump.

Insulin Pump Decision 2016

Laddie_Head SquareAnd the choice is…

Next week I will be ordering a new pump or at least I hope I will. My decision could have been difficult, but because of the narrow time window for ordering my pump and looking at my future under Medicare, it was easy.

Timing:

As someone who uses a lot of technology to manage my diabetes, I satisfy my insurance deductible long before the end of the year. With my 2016 deductible satisfied, my pump will be covered at no cost to me—as long as it is shipped before the end of the year. I think I dawdled last time I purchased a pump and ended up with a warranty expiration date in December. Not great timing as I would feel more comfortable if I already had the pump in hand.

My timing is also affected by my move to Medicare in April 2017. I will have individual insurance for January-March, but it will have such a high deductible that a pump purchase would essentially be out-of-pocket. If for some reason I don’t get the new pump in December, I will wait until after April 1. It is not ideal to start Medicare needing a high-ticket item and I don’t know whether I would be forced to abide by the Medicare policy of a 5-year warranty on pumps. I don’t think so because Medicare did not purchase my current pump, but you never know.

Timing also affects what pump I will select. I would like the opportunity to try out the Medtronic 630G, but only if I would be eligible to upgrade to the 670G. Unfortunately I will be on Medicare by the time the 670G is released and Medicare beneficiaries are not allowed to participate in manufacturer upgrade programs. I have been told that this rule is part of anti-fraud regulations, but it truly makes no sense to me. It is not as though there is any cost to Medicare to allow me to upgrade if I pay the out-of-pocket cost (if any) and I don’t see how anything about it is fraudulent. But this is not a battle I can win and therefore I will not buy a Medtronic pump at this time. I don’t find the 630G sufficiently appealing to live with for 4 or 5 years especially since it uses the current generation of Enlite sensors and not the improved sensors that are part of the 670G system. I could wait until the 670G is released but there is no guarantee of Medicare coverage.

Pump Options:

Accu-Chek: I have never considered an Accu-Chek pump. I think some people are very happy with the Accu-Chek Combo, but there is little about it that excites me. I don’t want a meter-remote and given my recent experience with the Accu-Chek Connect meter, I don’t want to be tied to using Accu-Chek test strips. Just not a good fit for me.

Animas: I currently use an Animas Vibe and it is an okay pump although I do not use it as a Dexcom G4 receiver. I have a very difficult time reading the screen in bright sunlight and that has been a real problem when hiking. It has started to lose the date/time info when I change the battery and I would not trust it for very long as an out-of-warranty device. A new Animas pump with Dexcom G5 integration is on the horizon, but there is no timetable for its release. Four years ago I purchased an Animas Ping because the market release of the Vibe was expected to be any day. It was over two years later.

Insulet: I have never been interested in the Omnipod and do not mind pump tubing. Although some Medicare Advantage and Cost plans cover the Pod, basic Medicare does not. As someone moving on to Medicare in four months, there is no reason to fall in love with the Omnipod.

Medtronic: It is mostly a timing problem as described above. I won’t purchase the Minimed 630G because it is a Windows Millennium pump. If you don’t know what that means, you are lucky. We owned several Windows ME computers and they ended up being a very short-lived and poorly-supported generation of computers. If the 670G were available today, I would seriously consider it.

So what’s left???

Tandem: I have decided to go with the Tandem t:slim X2. I am excited to move to a touchscreen device and am especially excited about the integrated Bluetooth and Tandem Updater. Do you notice that I used the word “excited” twice? When I selected the Animas Ping four years ago, I considered the t:slim and passed on it because of the lack of an upgrade program and I didn’t want a rechargeable pump. I never liked my Ping and was jealous of those who “loved” and were “excited” about their t:slims.

A huge selling-point of the X2 is that it will allow users to update the software in the future to accommodate new features, the first being integration with the Dexcom G5 CGM. Automated insulin delivery algorithms are also on the horizon. I personally hope that the Bluetooth connectivity will allow Bluetooth BG meters to automatically populate BG numbers into the pump. Although Medicare does not allow participation in hardwaretslim_x2_insulin_pump_front_view_rgb upgrade programs, my fingers are crossed that software updates will be allowed. I discussed the Medicare problem with my local Tandem Rep and he indicated that Tandem is aware of the issue and hopes to make Medicare recipients eligible for software updates. I know that nothing is guaranteed.

To tell the truth, I still do not want a rechargeable pump. I have always liked the confidence generated by a spare battery in my meter case. But I will adjust.

One Worry:

My individual insurance policy is being cancelled at the end of the year because BCBS of MN is leaving the individual insurance market except for one hugely expensive policy. When I ordered sensors 10 days ago, the supplier indicated that I needed an insurance pre-authorization which I had not needed in several years. I panicked thinking that the insurance company was implementing a year-end money-saving policy of denying DME. I had visions of a new pump being denied. Fortunately Tandem has reviewed my policy and indicated that they are confident the pump will be approved. But until it is safely in my hands, I will worry. (And I did receive the sensors.)

Final Thoughts:

In our family we keep cars a long time. Although my primary car is a 2012 model, I still drive a 1999 SUV several times a week. As I age, it is easy to wonder if my current or next car will be my “last car.” That makes me a little sad because I love the excitement of buying and driving a new car.

I am not yet at the point where I think that the pump I select today will be my “last pump.” But with Medicare’s pump 5-year warranty policy, I am certainly not looking at an unending stream of new insulin devices. At age 64 I hope to have many years of continued good health and many more pumps, but the future is unknown. Will I get the opportunity to use an artificial pancreas-enabled pump? Maybe. Will I quit pumping entirely? Maybe. Will I some day live with implanted beta cells? Doubtful. Will I be cured of diabetes? No. I am not worrying about any of this. It is all in the “I wonder” category.

Today I look forward to using a Tandem X2 pump. Unlike previous pump decisions where I had doubts about the “right” choice, I am confident about this decision. I don’t expect absolute perfection with the X2, but I hope for excitement and the opportunity to have pump hardware that can move into the future with software changes. Fingers crossed.

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Pump comparison charts quickly become out-of-date as new pumps and manufacturers enter and leave the market. If you’re considering an insulin pump purchase, a good place to begin is here and here along with technology articles at Diatribe and Diabetes Mine. Ultimately manufacturer websites and sales reps are an excellent (but biased?) source for current information. And don’t forget to ask your DOC friends for their experiences and opinions.

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.

Back to the Future:  Dexcom G4 Share and Apple Watch

Laddie_Head SquareIn the last 10 days, my diabetes technology world has changed. On one hand I have reverted to an older tech platform. On the other hand I have zoomed into the future with a modern and cool-for-a-64-year-old-woman device.

Stepping Back:  After getting my free(!) upgrade to the Dexcom G5 last fall, I was lucky to be left with an unused G4 transmitter. I didn’t start using the G5 until March when my previous G4 transmitter passed its 1-year anniversary. It was still working fine, but I abandoned it to transition to the G5 platform. A bit wasteful, but gee whiz, that transmitter was never going to die! I used two G5 transmitters and for the most part was happy with G5.

That unused G4 transmitter did not disappear and kept sending “Use Me! Use Me!” messages to my brain inbox. If I were not moving to Medicare and no CGM coverage in 6 months, I probably would have used my “privileged diabetes patient” status to stay with G5 and give the unused G4 transmitter to a  needy DOC friend.

Last weekend my second G5 transmitter timed out and I bit the bullet to go back to G4. My CGM warranty expired in early September and I was able to order a new G4 Share receiver. Although it had only been 6+ months since I had last used Share, I panicked as it seemed totally foreign to me. Also because I am using the mySugr logbook, I needed to be sure that my CGM information would continue to sync to the app. Miraculously I figured everything out and it is working correctly.

Onward to the Future:  Earlier this fall I decided that I would use my #firstworldprivilege to order an Apple Watch so that I could see my current blood sugar just by raising my wrist. Please remember that I started my diabetes career in the days of urine testing and things like this are magical to me.d-tech-privilege-circle

My Apple Watch 2 arrived last week. I have not worn a wristwatch in 12+ years since I got my first insulin pump, aka pocket watch. It wasn’t terribly difficult to add the Share app to the watch and it works okay. Unfortunately it cannot be used as a watch face “complication” like the G5 app. There is another app called “Watch Sugar” that allows me to add the Dexcom number to my watch face, but it is so time-delayed that I don’t find it helpful.

Basically I leave the Dexcom Share app open on the watch all of the time and it is usually what I see first when I raise my wrist. When Share is not the wake-up screen, it is easy to find the app in the dashboard and restore it. My difficulty with this whole set-up is that occasionally it just doesn’t work. If I am using other Bluetooth devices such as headphones or a speaker, I think the phone gets confused and occasionally loses the signal from the Dexcom receiver. There are also user-error problems such as leaving the receiver upstairs or closing out the Share app on my phone.

Clash of the Past and Future:  The bad part about these D-tech changes is that now I have two more devices to carry, coordinate, and charge than I did two weeks ago. The G4 requires a receiver and of course the watch is added. The blood glucose number that I see on my wrist starts with the transmitter beaming info to the receiver which communicates with the phone that sends it to the watch. There is definitely some mental fatigue and data overload with this set-up. At the same time I love not having to reach into my pocket to retrieve Dexcom data.

Life is good. It might would be nice if I didn’t diabetes but that horse left the barn a long time ago. So today I give thanks for access to technology that make my life with diabetes a little bit easier and a lot more interesting. 😀

Congrats to Medtronic!

Laddie_Head SquareUnless you are living in an underground bunker, you know that Medtronic Diabetes announced yesterday that the MiniMed 670G hybrid closed loop system has been approved by the FDA with anticipated shipping in the spring of 2017. Here’s a link to the press release if you haven’t read it yet.

Am I excited about this? Absolutely yes!!! Will I purchase it? Absolutely not!!!

You may think that I won’t purchase this because I am currently a Dexcom and Animas user. You may think that I won’t purchase this because I’m mad about the United Healthcare/Medtronic agreement. You may think that I won’t purchase this because “The Cure” will be here in five years. No, those are not the reasons. What is preventing me from pursuing this device is my next pump and CGM is ⚡️⚡️⚡️⚡️

Those lightening bolts are supposed to grab your attention and make you sit on the edge of your seat as I explain my predicament.

My issue is that I am going on Medicare in April 2017 after having my current pump go out of warranty in December 2016. I long ago satisfied my deductible for 2016 and if I purchase a pump before the end of the year, it will be at no cost. The individual health insurance market in Minnesota is in chaos and I plan to purchase the cheapest insurance plan possible for January through March 2017. It will be expensive despite a high deductible. No way can I purchase a new pump in that time frame.

So my choice is to purchase a pump in early December or enter 2017 with an out-of-110089warranty pump and wait until Medicare. A naive advisor might suggest that I buy the Medtronic 630G in December knowing that those buyers will be the first in line for the 670G pump when it is released in the spring. But guess what! Once you get on Medicare, it is against Medicare law for beneficiaries to participate in upgrade programs. So if I purchase a 630G, that will be my pump for the next 4-5 years because I will not be allowed to upgrade to the 670G.

A Medtronic representative told me on Saturday that the 630G is now being reimbursed by Medicare. The sensors are not Medicare-eligible, but at least the pump is covered. If I wait hoping to purchase a 670G after April 1, the most likely possibility is that it will not be covered by Medicare for quite a while. Hopefully I am wrong on that.

I am excited that the FDA has approved the MiniMed 670G. Medtronic is not calling it an  artificial pancreas, but it is an important step on the journey to complete insulin automation. That is good for all of us excited about the future of diabetes technology.

But for me, it is not in the game. My reimbursement scenarios just don’t fit the timing of this release. Anyone who reads my blog regularly knows that I currently use Dexcom after several unhappy years with Medtronic SofSensors. The Guardian Sensor 3 that is part of the 670G is many generations removed from that nightmare and I would be open to trying them. But it would be too big a leap of faith to move back to Medtronic without a trial run. Maybe that will be possible in the future when hopefully, hopefully, hopefully CGM/pump systems will be reimbursable under Medicare.

Today my options are too tangled and uncertain to make the MiniMed 670G part of my plans. But I will still camp out in the grandstands with other diabetes advocates yelling “Congrats!” to Medtronic. We live in a golden age of diabetes tech. Unfortunately we also live in a stone age of diabetes reimbursement for those of us who are approaching age 65 and older.

Moosh and Monsters:  A Journal about mySugr

Laddie_Head SquareI am currently one of the beta-testers for the coaching module which has just been added to the mySugr Diabetes Logbook app. You may have seen a recent announcement about this feature which will allow users to receive virtual coaching from Gary Scheiner and other CDE’s of Integrated Diabetes Services. To learn about the program, check out “mySugr Coaching – your shortcut to great diabetes management” by Scott Johnson, the USA Communications Lead for mySugr. Another good source of information is this Diabetes Mine article by Mike Hoskins titled “A New Age of Mobile Diabetes Education and Coaching.”

I have been using the mySugr Diabetes Logbook full-time for two months. To best describe the experience, I am sharing my journal of insights, problems, and opinions. Please note that I am in the early stages of the coaching experience and will share that story in another blogpost.

Journal

Thursday 7/21/16:  I saw Scott Johnson at an ADA seminar today. He asked if I would like some personal consulting sessions with Gary Scheiner of Integrated Diabetes Services. I have several times been a phone call away from calling IDS for help, but have never done it. So of course I said yes. According to Scott, the details of the project are still a little sketchy but will involve using the mySugr Logbook app to communicate virtually.

I like mySugr and have always thought that it is by far the best of the diabetes logging apps. But I have never been a faithful user. Too much data entry has always sidelined me after a week or two.

Friday, 7/22/16:  I began using mySugr again. I have to admit that it has been a year since I last used it and it is much more functional than before. My Dexcom CGM data ismy-monster automatically synced to the app through Apple Health. Most of the data entry is easy with icons and the ability to customize, rearrange, and delete line items. My personal monster whom I named Glukomutant is cute.

Friday 7/29:  I am a week into logging and a day into using the Accu-Chek Connect meter provided to me by mySugr. The meter automatically sends BG numbers to my phone and the mySugr app.

The Connect meter makes mySugr infinitely easier to use because it is one more piece of data that I don’t have to type in. The hardest part of having my phone be a medical device is that I am using my sometimes-bad memory to coordinate data from the Dexcom app, the mySugr app, my pump, my meters, and my life. Scott showed me a couple of shortcuts and let me know what info he enters and what he ignores. He indicated that the app will “moosh” all data entered within 10 minutes into one entry. “Moosh” is Scott-lingo for “fetch and combine.” For example, I test my BG and enter a correction bolus. A few minutes later I decide I to eat and enter my food, carb count, and a couple of tags. It will “moosh” it all together into one log to prevent an unwieldy number of entries in the logbook.

Right now I keep forgetting bolus details the second the pump delivers the insulin and I have to go to the pump history menu to get the info. I’m sure that I will get better at remembering numbers and not get so tangled up creating an entry. Long term mySugr hopes to automate all data sources so that there is very little manual data entry.

Tuesday, August 2:  Today I started a new Dexcom sensor. For the 2 start-up calibrations, I got the following numbers from the Accu-Chek Connect meter: 85 / 108. I did a 3rd test to get a better sense and got 78. This is why I use Freestyle meters. I will try to stick with the Accu-Chek meter for my trial and I did order a bunch of test strips. Out of curiosity I tested on my Freestyle Lite meter. I got 84 / 87. For consistency I used the Accu-chek to calibrate my CGM which interpreted the two tests as 96. Since Freestyle is often considered to test on the low side, the numbers aren’t too horribly different.

Saturday, August 6:  The mySugr app allows basal changes by the hour or half-hour. When using half-hour, I would prefer that the basal rate still show the hourly rate because I have never thought of basal rates in half-hour segments although I often change rates on the half-hour. Does that make sense?

logbook-en-homescreenSaturday, August 6:  I am used to reviewing my CGM tracings and feel as though I get a good overview of the “forest.” With mySugr I feel as though I am down in the trees with a lot of emphasis on average and deviation, both of which are highly affected by a single number. I think that once I have more weeks of data, the summary reports will be more helpful.

Saturday, August 6:  Once again not thrilled with meter. CGM 145, Accu-Chek 118, Freestyle 138. Most of the time the meter is fine and aligns very well with my Freestyle. It syncs amazingly fast to my phone.

Sunday, Aug 7:  Would like an icon for combo/extended bolus and maybe a way to log it besides using notes.

Although the ability to take photos of food is nice, I rarely do it. One of the most useful features is Search. Since I live in a rut and often eat the same foods every day, I can search by things such as “Lunch” and “Salad” and compare how I have bolused for similar meals in the past.

Thursday August 11:  Love how the app learns words I use. For example: CGM, Oatmeal, Walking.

Wish pump bolus info was synced. I do everything on my pump and then enter it again on app. I have accessed my pump history more times in the last month than the previous four years. Wish I remembered it better.

Would like an icon for CGM calibration.

Sunday, August 14:  I learn something new every day. When scrolling down BG numbers, I see that the ones from the Accu-Chek meter are marked with a “Verified” symbol while manual entry ones aren’t.

Saturday, August 20:  I am definitely in the habit of logging, but am hitting the wall of data fatigue. It is quite horrible to see how many “interactions” I have with diabetes every day.

Wednesday Aug 24:  Noticed that my step count from Apple Health is now included in the mySugr daily summary. I love data that I don’t have to enter!

Sunday, Aug 28:  I need to learn more about the reports and graph. Would like to see the graph in landscape view.

Wednesday, Sept 7:  When I activated the consulting module, I filled out everything. Then when I went to settings to activate the camera for a selfie, everything was lost. The perils of being a beta-tester. 🙁

Monday, Sept 12:  Learned that I can swipe an entry to the right to see a menu of Share-Edit-Delete (I had been selecting the entry and pressing the Edit button). This is so much faster. Scott probably showed me this and I forgot. #OldAge. 😀

Saturday, September 17:  My consulting request has been submitted and I am waiting to hear back from Gary. I usually think that my numbers are erratic and unexplainable. However mySugr reports show that my 7-day, 14-day, and 30-day summaries are eerily consistent. I am nervous about having someone review my data.

To be continued…. 

***

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.

*******

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.

Subtracting the Adjunct from Dexcom G5

I will preface this blogpost by reminding you that I am not a medical professional and I am not suggesting that you do what I do.

Laddie_Head SquareSetting the Scene:  On July 21 Dexcom will have an Advisory Panel hearing with the FDA to discuss whether Dexcom’s G5 CGM should be officially approved for dosing insulin. (This Diatribe article gives information on the meeting and how to provide comments or attend in person.) Currently the G5 has “adjunctive” labeling which means that it is approved by the FDA to be used with confirmatory finger stick testing. Non-adjunctive labeling will help CGM’s receive approval for Medicare coverage as well as justify CGM use for more people with diabetes. In September 2015 the G5 was approved with proper calibration for insulin dosing in Europe.

Background:  Three years ago I wrote a blogpost about how frequently I dose off of my Dexcom. In that post I mentioned bolstering my Dexcom confidence with an average of 8 meter tests a day. Not much has changed since then except I now back up my Dexcom with only 4-6 daily finger sticks. Two of those BG tests are for calibration so it is evident that I am relying on Dexcom for most of my BG information.

Dexcom Blindman’s Bluff:  Earlier in June I decided to test my confidence in the Dexcom G5 and play a game that could be called Dexcom Blindman’s Bluff. The purpose was to experiment with reducing the number of meter tests even further and to consider whether I have enough trust in a CGM to allow it to be the basis for all insulin dosing as it might be in an artificial pancreas (AP) system.

Articles about improvements in AP technology seemed to be published daily. Many clinical trials report average blood glucose numbers in the high 120’s to the low 140’s. For the vast majority of people with Type 1 diabetes, those numbers would be a significant improvement.

I am a T1 who has managed to have lower averages than that for many years. Would I be willing to trade a higher A1c for a huge decrease in the mental burden of diabetes alongBlindFolded Woman with a significant reduction in variability and the number of lows? I suspect that I would although I know some T1’s who definitely would not. Secondly, would I trust a Dexcom sensor to give sufficiently accurate results to dose insulin without my input?

For 48 hours on June 7-8, I decided to accept all numbers in my Dexcom target range of 70-160. The rule was No peeking at my G5 screen for any reason other than to act on prompts for calibration and alerts for out-of-range BG’s. I would use my Freestyle meter only for calibrations. I would rely on Dex alert numbers as the basis for correcting lows and highs and no meter tests for confirmation were allowed. Before eating I would not check my Dex for my current BG status and I would dose insulin based only on the carb count of the food I was eating and my anticipated activity level. If I hadn’t received an alert, I knew that my BG was somewhere between 70 and 160 and that was it.

Because I had Dexcom alerts and calibrations, I didn’t believe that I was doing anything horrendously dangerous. After all, those of us diagnosed with Type 1 diabetes before the mid-1980’s had no home blood glucose monitoring and played “chicken” with diabetes every day.

Results: I had no problems blindly following my Dexcom G5 for 2 days and I was comfortable letting Dexcom run the show. That confidence came with a couple of caveats. The sensor was a week old and had already proven itself to be reasonably accurate. I was close to home both days and not climbing mountains, playing golf, or eating chocolate-covered donuts.

I am the first to admit that my results were skewed for the experiment because I tried to avoid anything that would push my BG out of range. It was two days of the best diabetes numbers that I have seen in ages. But good numbers weren’t the purpose of the experiment and when I got a couple of low alerts overnight, I treated them with no meter confirmation and the same with an afternoon high.

Dexcom Clarity Graphs

This experiment reinforced how little I can feel differences in my blood sugar. Most of the time I had no clue where my BG was in my range. 75 or 155? I had no idea.

Although a two-day test is not sufficient to prove that I would trust the Dex as the compass for an artificial pancreas, it did show me how quickly I could adjust to accepting all numbers in a target range and letting a tech device deal with the minutiae. The idea of not thinking about blood sugars all of the time was very enticing and a slightly higher A1c, especially with less BG variability, might be a small price to pay for a more “normal” life.

Longterm:  Two days was only a toe in the water of using a CGM as my primary blood glucose guide. I thought about doing a longer test, but I couldn’t think of any reason to continue using a CGM blinded. Trends, spot-checks, and pre-meal info are crucial features of CGM use and it is an artificial, somewhat silly game to do without them.

Even when personal experiments aren’t scientific and don’t prove a lot, they definitely relieve the tedium of diabetes and that is something I need. A more apt experiment for testing the G5 as a non-adjunctive device would be where I used my meter only for calibrations and as Dexcom recommends in Europe, when BG is low or changing rapidly. I don’t need to do that test because that’s close to what my life is right now.

Access Matters: My Statement for DPAC

Laddie_Head SquareIn order to amplify the voices of those of us who oppose the recent mandate by UnitedHealthCare to cover only Medtronic pumps, DPAC (Diabetes Patient Advocacy Coalition) is asking everyone affected by diabetes to share their story. Follow this link to help DPAC gather “stories to share publicly within the community and, perhaps more importantly, within the healthcare and legislative communities.” Your voice will help prove that #DiabetesAccessMatters and will advocate for #MyPumpChoice and #PatientsOverProfits.

I don’t know whether my experiences will help because my diabetes narrative is that of a “privileged patient” who has always had access to prescribed insulins, meters, pumps, and CGM’s. How do I prove that access and choice have made a difference?

My Story as Submitted to DPAC:

I have had Type 1 diabetes since 1976. When I was diagnosed there was no home blood glucose monitoring and I took 1 injection of insulin per day. My chances for a long healthy life were minimal and complications such as blindness, amputation, and kidney disease were seen as almost inevitable.

Today I am 64 years old. I have gray hair and am stiff from arthritis, but my eyes are fine. My body has bruises and rashes from pump and CGM sites, but I have no numbness in my feet and my kidney function is fine. I rarely have a day without lows requiring glucose tabs, but I have not needed my husband to fetch emergency orange juice since starting the Dexcom G4 in 2012. My lab tests are good and my cardiac function tests are excellent.

So what happened?AccessMatters

Hard work paid off. Lucky genes probably helped. But what is most important is that I had ACCESS.

ACCESS to medical professionals who learned through the Diabetes Control and Complications Trial (DCCT) that controlling blood sugar results in better health for people with Type 1 diabetes.

ACCESS to new and improved insulin products as they were brought to market.

ACCESS to the newest technologies which began with home BG meters in the early 1980’s and expanded to insulin pumps and continuous glucose monitors (CGM) in later years.

ACCESS to education about how to optimally manage my diabetes.

ACCESS to social support through the DOC (Diabetes Online Community).

Along with access, I had CHOICE.MyPumpChoice

When my internal medicine doctor was unqualified to prescribe a pump, I CHOSE to switch to an endocrinologist.

After experimenting to prove that the blood glucose monitor I was using was unreliable, I CHOSE to switch brands to a meter which provided more consistent results.

When my endocrinologist and I agreed that my diabetes could be better managed with an insulin pump as opposed to injections, I investigated my options and CHOSE the pump that I believed would give me the best results.

When my doctor prescribed a CGM to combat my hypo-unawareness and extreme lows, I CHOSE to give it a try.

After a few years of failure with the CGM brand that I selected, my doctor and I worked together and CHOSE the competing brand.

I am incredibly lucky to have always had good insurance. I have had access and I have had choice. Many years ago my insurance was provided as one of my husband’s work benefits. The cost to us was minimal. Today I pay huge insurance premiums, but I still have access to the medications and durable medical equipment (pump and CGM) that my endocrinologist and I choose.

An insurance company is in business to make money and does not have a license to practice medicine. Once I pay my premiums, access and choice should be in my hands and those of my medical team. The idea that UnitedHealthCare has the right to change its policies on insulin pumps mid-year and mid-contract is wrong. Big players in the game making deals to reduce competition and limit choice should not be allowed.

How do I prove that ACCESS and CHOICE have made a difference in my life with diabetes?

I look in the mirror.