A Looping Failure

Posted on August 22, 2019 by Laddie

A few days ago I unscrewed the top of my RileyLink case, removed the tiny circuit board, and disconnected the battery. I put the box of pods back in the closet and retrieved my Tandem pump from the medical supply clutter box.

I am officially declaring my Looping experiment to be over.

If you don’t know what Looping is, it is a user-created app for an automated insulin delivery system that pairs an Omnipod or old Medtronic pump, a CGM, and a computer algorithm. If you want to learn more, read Loop Docs and check out the Looped Facebook group. Earlier this summer with files made available by the rockstars of the Do-It-Yourself community, I used my Mac laptop and a newly-acquired Apple Developer Account to create the Loop app on my iPhone. It was a miraculous experience for an experienced person with diabetes and a relatively inexperienced techie.

But I hated the pods. They often hurt and my insulin absorption was erratic. The occasional dark red/purple bruises were quite horrible and proof that diabetes can be a blood and gore sport. Some days the pods worked great. Other days I would bolus and bolus (or Loop would basal and basal) with seemingly no effect on my blood sugar.

Previous to the opportunity to try Looping with an Omnipod, I was never interested in pods. I was convinced that they would be more awkward on my body than a tubed pump and infusion set. This feeling is why it is important to have CHOICE for those of us with diabetes. As much as I hate pods, there are people who despise tubes and love podding. I started using pods a few weeks before starting to Loop and quickly discovered that even changing pods every two days didn’t give consistent results. But I was excited at the possibility of automated insulin delivery and persevered.

In order to have success Looping, your pump settings must be close to perfect. Basal rates, bolus ratios, and insulin sensitivity factors are hugely important. My experience was that settings which worked well one day were abysmally wrong the next day. Because of my variable results with pods, I was pessimistic that I could get settings that would work consistently.

But it would be unfair to blame all of my Looping problems on pods. I was an emotional Looper and incredibly impatient when things didn’t go well. Instead of methodically problem-solving, I either randomly changed pump settings or in frustration went back to my Tandem pump for a couple of days. I was not good at relinquishing control over my insulin delivery and couldn’t move past 42 years of being the brain for my diabetes.

All along I have known that my future is with Tandem. In the last year I have been frustrated at my inability to use Basal IQ because of Dexcom’s delay in providing seniors with the Dexcom G6. But it will come and I am cautiously excited about the Tandem Control IQ hybrid-closed loop that that will be available late this year or early next. I thought Looping would be a good experiment for the months while I continue to wait for G6.

Longterm using an Omnipod is incredibly expensive under Medicare in comparison to a tubed pump. My Tandem pump, its supplies, and insulin are covered under Part B where Basic Medicare pays 80% of the cost and my Supplemental plan pays the remaining 20%. Thus I have no out-of-pocket cost. Omnipod is covered under Medicare Part D pharmacy benefits. With my Cigna plan, the pods were Tier 3 with a $405 annual deductible and then hefty copays. Plus my insulin was provided under Tier 3 pharmacy benefits with copays and donut-hole repercussions.

One reason that it was easy for me to abandon Loop is that prior to Looping, my diabetes numbers were mostly “in range.” Interestingly I compared 2-week Dexcom Clarity reports between Looping and my Tandem pump and the statistics were virtually identical. My hope with Looping was to reduce the mental burden of diabetes and it never really happened. I had some wonderful overnights where Loop prevented lows and highs and I woke up at a steady BG of 93. But I had just as many nights with constant Dexcom low and high alarms. In general I wasn’t one of the experienced and ecstatic Loopers who saw meaningful improvements in their diabetes life. And remember I was too impatient to keep working at it.

Will I try Looping again? Maybe, maybe not. There were things I loved about Looping: being in charge of my settings, targets, and alerts, controlling my diabetes from my iPhone and Apple Watch, and the potential to free up brain width that never rests with diabetes. The Looping community is incredible with help, expertise, and support given to all-comers (except the grouchy ones). Automated insulin delivery is the future but we are still limited by hardware, the speed of insulin, and the infinite complexity of Type 1 diabetes.

Today I am very comfortable with my decision to abandon Looping. I am relieved to be back using a tubed pump with less pain and somewhat more predictable results. There are definite warts using my Tandem pump with occasional occlusion alarms and non-customizable annoying alerts. But I am comfortable being back to “what I know.” I learned a lot while Looping and for sure gained more appreciation of how incredibly difficult it is to manage diabetes. I was once again reminded that while improvement is possible, perfection is not.

If you are interested in Looping, I encourage you to check it out. My experience was only my experience and not an indication of how the system will work for you. Lots of people are having great success with this do-it-yourself app and I am grateful for having had the opportunity to Loop and then the opportunity not to Loop.

Diabetes, Just Tell Me!

Posted on June 5, 2019 by Laddie

Lately I have been having days, well actually weeks when I am starting to question how I deal with my diabetes. I have used an insulin pump for 15 years and don’t really want to change back to injections. For me a pump is more convenient and allows multiple basal rates and easy bolusing through the day. I have used a continuous glucose monitor for 10 years and can’t or don’t want to imagine doing without the constant blood glucose numbers on my phone and watch.

But lately I feel as though my tech has been failing me and I’ll show that through a couple of photos below.

The first day of a new Dexcom G5 sensor:

The graph of a pod starting to fail after less than two days. The downslope reflects a new pod:

But what if it isn’t my tech? What if it is just my body and my diabetes? I have seen a ton of crazy up arrows on my Dexcom in recent weeks and many of them have been unexpected. I am quick to blame the sensor but unfortunately most of the time my meter has confirmed the Himalayan-esque rises and falls. But sometimes it is the sensor. I have had numerous high BG numbers that have not resolved until I changed out a Tandem infusion set or these days, a new Pod. But sometimes the highs are from last night’s pizza or the second or third glass of wine.

Most of the time I just don’t know. Why doesn’t diabetes just tell me the answer!?!

I know that my life is a constant science experiment and I am usually pretty good at figuring out what is going on. Although I get frustrated, angry, and guilty at some of my aberrant Dexcom graphs, I do my best to correct the numbers as quickly as possible. My A1c’s continue to be good and I feel good most of the time. And when I don’t feel good, arthritis is the culprit not endocrine issues. But Type 1 is always in the background laughing at my attempts at perfection. I‘m caught in the hamster wheel of trying to get it right. All of the time. But not changing my ways.

Sometimes I think the hardest part of diabetes is not always knowing the “why’s” of what is going on. Is my rising blood sugar this evening a result of what I ate for dinner? Or is my infusion site giving out? Is there a problem with air in my pump cartridge? Is the insulin old and compromised by the heat of my rechargeable pump battery? Most of us are familiar with the list that Adam Brown of Diatribe compiled titled “42 Factors That Affect Blood Glucose.” They all make sense but a checklist of possibilities doesn’t always help me dig out of today’s hole.

Why can’t degraded insulin turn purple? Why can’t my Dexcom have a footnote specifying whether a number is reliable or fantasy? Why can’t my body tell me whether an early morning high is hormones or a pod gone bad? Why can’t I have the type of diabetes that only drifts high and low instead of Dex double-upping or double-downing? I could go on with more why’s but I think you get the picture.

To tell you the truth, I suspect that if blood glucose numbers were the #1 aim in my life, I would be better served by eating a Bernstein-ian ultra low carb diet and using a cocktail of insulin by injection. Although tech is great, I am lately not finding it to be very reliable. But I am stubborn and am somewhat addicted to the toys and challenge of diabetes tech.

So instead of going back to the basics, I am currently using an Omnipod in anticipation of starting to Loop. I have used three pods and not one of them has made it to 48 hours before soaring blood sugars. And I don’t know why. The idea that Looping with Omnipod is going to be successful for me is probably a pipe dream.

I think I might be dealing with diabetes distress but that’s not the subject of this post….

Insulin Pump Decision 2016

Posted on November 28, 2016 by Laddie

Laddie_Head Square And 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 hardware tslim_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.

********

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.

Musings on Approaching Medicare

Posted on December 11, 2014 by Sue from New York

I will turn 65 in May, which means I will be Medicare eligible. I have several friends and family members who thought going on Medicare was a wonderful blessing, because they now had affordable health insurance that also covered extras like well exams and gym memberships. Of course I think that Medicare is a blessing for seniors. However, for Type 1 diabetics who have had use of a continuous glucose monitor (CGM) to give them a continuous readout of their blood sugars, thus minimizing hypo and hyperglycemic episodes, this often meant that they lost whatever health insurance plan they were on, and were forced to go on Medicare. Unfortunately, Medicare presently does not cover CGM’s because they consider it “precautionary equipment”.

Anyone who regularly reads Test Guess and Go and has read Sue from Pennsylvania’s blogs about her husband losing his CGM coverage and his numerous appeals to get it reinstated already knows what a futile effort that is. Thankfully, Sue’s husband was able to get CGM coverage through the Veterans Administration. There is presently a House bill (H.R. 5644: Medicare CGM Access Act of 2014) and a companion Senate bill (S. 2689) that would facilitate Medicare coverage of CGM’s. If you haven’t already done so, please ask your representative and senator to co-sponsor these important bills.

I am somewhat apprehensive as I approach Medicare. I say somewhat, because I am lucky to have retiree health insurance through the school district I worked for, and will be able to continue with this insurance after I go on Medicare. I presently have excellent coverage of my CGM, but at one time I received a denial of coverage, appealed the decision and won my appeal. I am concerned that my insurance plan will follow Medicare guidelines and deny coverage. I will not know until I go on Medicare, so I will have to wait and see what happens, but I am hoping that they will continue to cover my Dexcom CGM. I am continually thankful that I have it, and am amazed at how much my quality of life has improved despite sometimes annoying beeps that warn me of impending high and low blood sugars.

I have been using the Omnipod pump since 2007, my one and only pump. I know that Medicare does not cover this pump, so if my retiree insurance won’t continue to cover this pump I will be forced to use a tubed pump. This is not such a big deal to me as continuing to use the Dexcom. Medicare Questions

If I am unlucky and my insurance plan won’t continue to cover my Dexcom, I will join the hundreds of other senior Type 1’s who can’t benefit from CGM coverage, putting their lives in danger every day. I pray that we can get more momentum for these bills and get them both signed into law.

If you have not previously contacted your Senators and U.S.
Representative to support CGM Coverage by Medicare, please
click here to go to the JDRF page that contains links and
easy-to-follow instructions to have your voice heard.

My Guardian Angel Has Helping Hands

Posted on November 13, 2013 by Sue from New York

Laddie: In recognition of November as Diabetes Awareness Month, Sue from New York, Sue from Pennsylvania, and I have written blog posts which will be published this week. Sue from New York has written about her appreciation for medical devices that help keep her out of harm’s way. This is a companion post to her wonderful post about the families of people with diabetes.

On August 19 I wrote a blog post titled The Saints We Call Our Family. In this blog I praised the family members who vigilantly keep us type 1 diabetics safe. I failed to give recognition to the medical devices that also keep us safe. I figured that there was no better time than Diabetes Awareness Month to give credit to the diabetes hardware that helps keep me healthy year-round.

My Dexcom G4 Platinum continuous glucose monitor is one of my guardian angel’s helping hands. It keeps me safe from rising and plunging blood sugar levels by giving out loud alerts that wake me in the middle of the night. It gives me constant feedback on how food and exercise affect my blood sugar. It is truly a life saver for insulin dependent diabetics.

My guardian angel’s other helping hand is my OmniPod pump. My pump has several useful purposes, one of which is calculating insulin on board so I don’t stack insulin when my blood sugar is high. My pump is also capable of giving me insulin in increments of five hundredths of a unit. That is an amazing thing, considering that insulin given by needle is measured by whole units.

Both of these devices have helped ward off the terrible hypoglycemic episodes that I used to have in the past. Emphasis on PAST. It has been three years since I have had a hypoglycemic episode when I needed external help.

My diabetes has been so much easier to handle since I’ve been blessed with these two miracles.

OmniPod’s New PDM

Posted on July 8, 2013 by Sue from New York

I had anxiously waited for several months to get my new OmniPod PDM and smaller pods. When they finally arrived I was very excited, but decided to finish using the old pods before starting the new ones. On the advice of a friend I did save one pod in case something happens to the new PDM, so I can use it with the old PDM before a new PDM replacement arrives.

I started using my new PDM and pods five days ago. During the setup, I was instructed to put in my ID Name, so I put in Sue. Now every time I turn on my PDM, including when I insert a test strip for a blood sugar check, I see this screen:

PDM ID:

Sue

Press “Confirm” if correct.

I wondered what could possibly be the reason for this extra step before using the PDM? Have there been people using the previous PDM who used someone else’s PDM by mistake? Shouldn’t they give us a way to shut this feature off if we so desire? My son, who also has type 1 diabetes, lived with us until 3 months ago. He uses the Medtronic pump, but if he used the OmniPod pump, we would have used different colored gel skins to differentiate them. That would have been easy enough to do, because I have four gel skins-two white, a lime green and my new black one that came with my new PDM.

Now I’m the only one in the house who has diabetes, so there is zero chance of someone else here wanting to inject insulin. So I decided to call Insulet Customer Support and ask if there was a way to turn this feature off. I was told that no, there is no way to turn it off (in other words, suck it up). I asked the reason for this feature, and was told that there are some families with more than one person with diabetes using the OmniPod PDM, and they added this feature to eliminate confusion. I guess it never occurred to them to tell those people to use different colored gel skins on their PDMs.

OK I’m trainable, and I’ll get used to this extra step, but it still seems silly to me. But on second thought, since this pump is not attached to the body like the conventional pumps, I suppose they are trying to eliminate any chance of being sued. I sure hope no one has already tried to sue them for this, because I do love the company and their new smaller pods and hope they continue to stay in business until there is a cure for diabetes, quirky PDM and all.