Tangled and Intertwined: Diabetes and Covid-19

A while back I started a blogpost with the words “tangled” and “intertwined.” The emotions prompting those words were powerful but I abandoned the post in favor of laziness.

Last Saturday I “attended” a virtual session at Friends for Life Orlando titled “Avoiding and Overcoming Diabetes Burnout.” The moderators were William Polonsky, PhD, CDE and Kerri Sparling. Partway through the session Kerri mentioned something about her diabetes and coronavirus being iinseparable and I thought “yes!” That is what I had originally been planning to write about. No doubt if Kerri were still blogging, she would say it better than I will, but we likely have the same thoughts muddling through our brains.

A lot of my musings go back to late January when I began using Dexcom G6 and Basal IQ on my Tandem X2 pump followed by Control IQ. I was on Control IQ for less than six weeks when the coronavirus invaded my world. For those of you not knowledgeable about diabetes tech, Control IQ is defined by Tandem Diabetes:

ControlIQ technology is an advanced hybrid closed-loop system that uses an algorithm to automatically adjust insulin in response to predicted glucose levels to help increase time in the American Diabetes Association-recommended target range (70-180 mg/dL).

I wrote a couple of blogposts about my early experiences with Control IQ and I don’t think that my opinions have changed a lot since the March post titled “Six Weeks: More Thoughts on Control IQ.” I am mostly okay with it and really appreciate the fact that I have almost zero low blood sugars. But my average blood sugar is higher than pre-Control IQ and I am frustrated that I am required to use Tandem’s conservative BG goals instead of the targets that I prefer. In general I am still trying to figure out how to lower my average blood sugar without constant suspensions of insulin that result in sticky highs later on. Some people on Facebook seem to do that successfully and post daily graphs that don’t make sense to me based on my experiences. At a late May appointment I questioned my endocrinologist on whether she had any suggestions, and she said “No. Control IQ is doing what it is supposed to do and you are doing great.”

And she is right. But diabetes is never independent of mental health and I struggle to accept the new numbers when I liked the old numbers and don’t completely understand the new numbers. But the old numbers reflected many low blood sugars and a lot of glucose tabs. At the same time the new numbers don’t display what I think the Sleep Mode of Control IQ should target. I have never experienced classical diabetes burnout but my diabetes is mucked up with anxiety, perfection, lack of perfection, unattainable goals, and just plain never-getting-a-vacation.

In the last paragraph I introduced “mental health.” Enter Coronavirus. I am 68 years old and have lived with diabetes for 43 years. I consider myself to be healthy but I deal with multitude autoimmune conditions. If I get diagnosed with Covid-19, I am probably doomed. But who knows? My self-destructive side just wants to get the virus and be done with it. Either die or hopefully recover with ongoing immunity. But don’t get worried. I am not attending Covid-19 parties and have recently started using InstaCart for grocery and Costco deliveries. 

But like every other person in the world, I mourn my former life. I miss fitness classes at the YMCA and reminisce about hanging out at McDonald’s drinking cheap Diet Coke while surfing the web and writing blogposts. I miss going to the movies. I long for lunch and coffee with friends. I desperately want to visit my Maryland grandchildren and currently accept the risk of outdoor babysitting the local grandkids. I am okay most days but about once a week I wake up with a black cloud over my head.

The black cloud is part coronavirus and part diabetes-Control IQ. I can’t untangle what is what and for sure I haven’t figured out a way to eliminate the occasional days that are plagued with pit-in-the-stomach sadness and frustration. I am totally cognizant of the fact that 42+ things influence blood sugar and that I will never be a “Perfect Diabetic.” I am fine most days but the wind periodically blows in black clouds that suffocate my normally optimistic view of life. 

I am sad. I am frustrated.

I am healthy. I am mostly happy.

I know that I live a privileged life. I have no worries about acquiring insulin, CGM sensors, and pump supplies. I have access to online fitness and yoga classes and live near safe walking trails. My husband is employed and at the moment we are safe financially. My children have jobs and their families are doing relatively well considering the stress of home schooling and few daycare resources. 

But when the black clouds park above my psyche, I can’t tell whether they are the result of diabetes or Covid-19.

It doesn’t matter.

In my world diabetes and Covid-19 are tangled and intertwined. 

Initial Thoughts on Tandem Control IQ

I started using Control IQ on my Tandem X2 pump two weeks ago.

In a mid-January blogpost I mentioned postponing the decision to move to Control IQ and just staying with Basal IQ. For those of you who don’t follow diabetes tech much, the main difference between the two algorithms is that Basal IQ only addresses low blood sugars and Control IQ works to limit both highs and lows. But along with addressing highs, Control IQ targets a higher range than I am comfortable with. For sure the biggest issue about the decision to update the software of a Tandem pump is that if you don’t like Control IQ, you cannot go back to Basal IQ. You’re stuck.

It was a joke to think that I would delay the opportunity to update my pump to Control IQ. I admit it. 1) I am a diabetes-tech junkie and 2) I have no willpower.

So here I am with Control IQ. There was a poll in a Facebook group this morning that stated “I have been using CIQ for at least two weeks and….” The possible answers were a) Love, b) The jury is still out on that, c) I don’t love it or hate it, d) I am so excited to get it, and e) If I could go back in time, I should have stuck with Basal IQ. 

I voted for c) and then commented: “I like Control IQ but am still micro-managing. So it’s not Love yet, but it’s a strong Like.”

Because I had a good A1c and TIR (time in range) before Control IQ, the main proof of success for Control IQ will be if I can get similar or slightly higher numbers without micro-managing. Without diabetes on the brain all of the time. Without constantly looking at numbers and either taking small boluses to correct or rage-bolusing when I am frustrated. There is a lot of room to improve my life with diabetes but I am not willing to accept an average blood sugar of 150. But I am willing to camp out in a range of 100-120.

I am being what is called a “Sleeping Beauty.” That means that I am using Sleep Mode 24 hours a day and that uses basal adjustments to target a range of 112.5-120 but does not include auto correction boluses. In contrast Normal Mode is okay with blood sugars up to 160 and no auto boluses unless BG is predicted to be above 180. Although my endocrinologist would say that those numbers would be fine for me, I want to stay lower and know that I can most of the time. There is a chart on this page showing the ranges for Normal Mode.

Many people have found that they need to adjust their pump settings to be successful with Control IQ. Many or most users have written on Facebook about making their settings much more aggressive. My initial days with Control IQ were rocky and I rarely had BG’s as low as the 110-120 range, even overnight. So I created a new pump profile titled “Aggressive.” And it was aggressively aggressive with high basals and correction factors that I had never previously used except when on steroids. Ultimately this aggressiveness was counter-productive because my basal insulin kept being reduced or suspended for long periods of time and that resulted in highs later on. This pump screen photo is an ugly result of too aggressive settings. My basals were reduced and suspended for almost 3 hours.

So then I created a new profile titled “Control IQ” which is somewhere in the middle between my previous “Normal” setting and the “Aggressive” setting. I sound like Goldilocks and the Three Bears with this porridge is too hot, this porridge is too cold, and this porridge is just right. There have to be some pump settings that are not too strong and not too weak, but just right!

Ultimately I think that minor adjustments to the Control IQ profile will be a good place for me. It uses about 10% more insulin than the pre-Control IQ “Normal” profile and isn’t overwhelmed by too many long insulin suspension. 

Meals are still hard to figure out with Control IQ. Sometimes when I pre-bolus for carbs, the system suspends my insulin and that is counter-intuitive to the BG rise that I know is coming. My current solution is to just eat lower-carb meals. That isn’t much different from how I normally eat but I need to get better at dosing for what I want to eat. I have been learning new things every day both from my own experiences and those of others on Facebook. One could argue that I shouldn’t get pump training from Facebook but I don’t think that endos and CDEs have enough experience with Control IQ yet to give expert advice. Plus we know that those of us with diabetes living in the trenches really are the experts.

Previous to using Control IQ I always consulted my phone and watch to see what was going on with my blood sugar. With Control IQ I am a pump junkie. My home screen shows red areas where insulin was reduced or suspended. A little diamond shows gray for normal basal rates, blue for increased rates, yellow for reduced rates, and red for suspended insulin. The Control IQ history is fascinating but it takes ten (!) button pushes to access it. It shows at what times and how my basal rates were adjusted. In the future Tandem will have a phone app that will mirror my pump screen. That can’t come soon enough because I keep pulling out my phone to get info that is only on my pump.

Be patient, Laddie. Be patient. It is coming.

Unlike some seniors who are askance at letting a tech device control their insulin, I am excited. I need help. I want to sleep better. I want fewer alarms. I want BG graphs with rolling hills and valleys and fewer Himalayan peaks. I want my diabetes to be easier.

I’ll say it again. I want my diabetes to be easier.

Ultimately I believe that all hybrid artificial pancreas systems (Tandem Control IQ, Medtronic 670G, Omnipod systems to come, and even do-it-yourself Loop systems) are limited by the speed of insulin. We need faster insulins with shorter durations. We need the ability to set our own target ranges. We need CGM systems that are even more accurate than today’s models.

But it is all coming. Step by step by step. 

Control IQ is a step forward for me. I don’t love it yet. But I think I will.

 

*The Goldilocks image was purchased from Shutterstock.com.

Diabetes Tech: Moving into the Future

2020 has brought long-awaited changes to my life with diabetes. I am using my second Dexcom G6 sensor and so far it has been fabulous. Of course there is something quite pitiful that a diabetes device is the coolest thing in my life and I am not bragging about a new Tesla or Coach purse. But that’s life with a chronic disease….

Those of us on Medicare are late to the G6 game and you can find tons of reviews online and don’t need a review from me. But I will quickly say that the insertions have been painless and I am seeing more consistent accuracy with G6 than I ever saw with G5. (And I considered G5 to be very good.) Here is an image from Day 9 of my first sensor.

I am thrilled with not having to calibrate the sensor. One, it is not required for accuracy in most cases. Two, it eliminates the constant calibration notifications on my phone, watch, and pump. I calibrated the first sensor twice. On Day 6 it was reading super low in the 50’s when my BG was 110. A calibration quickly brought it back in line without the delays or rebounds common with G5. But the next day all of a sudden the sensor was reading too high and I had to do a reverse calibration of the previous day. The two calibrations essentially cancelled each other out and I wonder if I shouldn’t have done the first one. To be determined as I gain more experience….

If my first two sensors are a valid test, I can say without doubt that Dexcom G6 is an improvement over G5. But the biggest change in my diabetes tech life is….

Basal IQ.

As described on the Tandem Diabetes provider website: “Basal-IQ technology uses a simple linear regression algorithm that uses Dexcom G6 CGM values to predict glucose levels 30 minutes ahead based on 3 of the last 4 consecutive CGM readings. If the glucose level is predicted to be less than 80 mg/dL, or if a CGM reading falls below 70 mg/dL, insulin delivery is suspended. Insulin delivery resumes as soon as sensor glucose values begin to rise.”

For many years I used temporary basal rates of zero to head off lows. But frankly although it was a helpful technique, it didn’t always work great. The insulin suspension took too long to work and often resulted in highs later on. The difference between my attempts at manipulating insulin and Basal IQ is that the Tandem pump suspends insulin predictively. It is smarter than I am. I am smart, but Basal IQ is smarter.

I have been using Basal IQ for 2 weeks and there is no doubt that I have had fewer lows. I have had a few nights where I had no Dexcom alarms for lows. For me that is monumental. But in typical diabetes fashion I have had a few nights with moderate highs that repeated boluses are slow to bring down. There is some comfort in knowing that I can bolus more aggressively than in the past because Basal IQ will ameliorate (but not necessarily prevent) the inevitable resulting lows.

One thing I like about Basal IQ is that I can chose no notifications when it turns on and off. I am a poster child for alarm fatigue with my diabetes devices. Basal IQ prevents a lot of my lows resulting in few alerts from the Dexcom app. But I still rarely have a night with no diabetes issues and either need to completely stop snacks in the evening or raise my high alarm threshold.

I think it is interesting that Basal IQ can be considered to be a basal test. One might argue that if you repeatedly have a 3-hour period overnight where your basal is suspended for almost the whole time, your basal rates might be too high. Or if you have a period of sustained highs and never have suspended insulin through another period, maybe your rates are too low. I assume that somewhere in between is the “sweet basal spot.” But maybe not — because I have always suspected that there is not a perfect basal profile that works for every day. Remember the Diatribe 42 factors that affect blood sugar. 

In the online community, especially the Seniors with Sensors group on Facebook, there are many seniors doing really well with their diabetes. The definition of “really well” differs from person to person. But at my age if you’re satisfied with your care, your D-numbers, and have a supportive doctor, I think you’re doing really well. Some seniors using the Tandem pump and Dexcom G6 are thrilled with Basal IQ and appreciate help avoiding lows. I am mostly in that group. Others are frustrated with post-insulin-suspension highs or are convinced that a sensor-augmented insulin delivery system can’t match their manual results. A lot of seniors are going to have a hard time giving up manual control of their diabetes and their concerns are valid. In contrast the diabetes world has a whole generation of CGM users growing up not knowing anything other than complete trust in their sensors. And soon that will be the norm, not we old folks who used pee-strips, urine-testing chemistry sets, and 15 BG meter tests a day.

Tandem’s Control IQ has been approved by the FDA and will soon be available via a software update to all of us with in-warranty Tandem X2 pumps. Even those of us on Medicare! My A1c and average BG will rise if I use Control IQ. Will the reduced mental burden be worth it? Statistics and my endo might argue that I would be healthier and living with less risk if my A1c increased. Am I old enough that I should be modifying my targets and treatment? Do current risk studies for seniors with Type 1 diabetes reflect the adoption of CGM technology that protects us from most severe lows? How good does my diabetes control have to be? The questions go on and on.

I know people online who will never adopt new technology that they don’t trust or that might raise their A1c’s out of the low 5’s. I know others who are always open to trying new things and are willing to take some risks on the path to diabetes nirvana. And for sure there are people who have struggled every day of their diabetes lives and are willing to let smart technology take control of their physical and mental health. I am not sure exactly where I stand on these decisions and know that I will be writing more in the future about Control IQ.

At the moment, I am still learning Basal IQ and feel my D-life has been improved with this technology and the Dexcom G6. One roadblock that might prevent me from updating my pump to Control IQ is that I will not have the option to go back to just Basal IQ. They are completely different pump software configurations and algorithms. By going with Control IQ I am limited to the programmed target blood glucose levels for highs and they are higher than I currently target. Basal IQ just addresses lows and leaves highs to me. Does it matter? I don’t know and plan to stay on the sidelines a while before making the commitment to change.

If you are considering Control IQ, I suggest that you listen to this Diabetes-Connections podcast where Stacey Simms interviews Molly McElwey Malloy from Tandem. After listening to the podcast I was comfortable that Control IQ would be good for me. But I know I need to learn more before committing. This coming Wednesday (1/15/20) Tandem will have a live presentation on Facebook explaining Control IQ and answering listener questions. I don’t have a specific link but here is a screenshot of the email i received from Tandem. For sure you’ll hear more from me in the future about Control IQ–my opinions and those of my fellow seniors with diabetes.

 

Two Tandem Infusion Set Tricks

I confess that I am not a total rule follower with my Tandem pump. But I think that some of the “not In the manual” things I do make my pumping experience better. Today I will share two Tandem infusion set hacks with you.

If you don’t use TruSteel or VariSoft infusion sets, you might want to quit reading now.

Pain with TruSteel Sets

Within the last year I have become a convert to metal infusion sets and with Tandem that is TruSteel. I find that insulin absorbs immediately after insertion unlike other infusion sets where I had to bolus or use a temp basal to prevent post-insertion highs. And I don’t get site failures. Except…. Sometimes TruSteels just hurt because it really is just like sticking a thumbtack into your body.

When discussions about pain come up in the Tandem t:slim Pump group on Facebook, many people say that these sets never hurt and lots of parents report that their children use them pain free. So am I a wimp? I guess so because I occasionally get lots of pain and pull sets prematurely or limit the locations where I use them. And for me a painful site gets inflamed quickly.

Last week in a Facebook discussion when I shared my wish that Tandem would make a metal set with a really short needle, my online friend “Lauren” suggested putting a small piece of gauze underneath the set to seemingly make the needle shorter. Wow! I always think I know all of the diabetes hacks, but that was something I had never thought of. At the same time I am lazy and couldn’t imagine cutting up tiny pieces of gauze. Brainstorm. How about a small round Bandaid that has a built-in gauze pad in the middle? 

I am on my 4th TruSteel with a triple layer of products and the results are incredibly good. I have no idea what the exact thickness of the Bandaid is, but it is enough that I have had zero pain even with rolling over and sleeping with a set on my hip. I never could do that before. Every location I have used has been pain free and the procedure is quite easy. Stick a round Bandaid on the intended site, insert the TruSteel needle through the central gauze pad, and then put a small rectangle of Opsite Flexifix or Tegaderm on top. (I have always used over-tape on the needle site because it prevents me from accidentally ripping off the set by catching my thumb in the tubing.)

Although I still think that Tandem should have a TruSteel set with a 4mm needle, this hack is currently a great work-around for me.

Using Animas and Medtronic sets with Tandem

The following hack only relates to TruSteel and VariSoft sets. It is possible that something similar can be done with other Tandem sets but I have never used those sets.

Interim Blurb:  I’ll preface the discussion by reminding you that tubing for insulin pumps has two ends. One end connects to the pump reservoir and is unique for each brand of pump. Tandem tubing will not connect to Medtronic or Animas reservoirs. Nor will Medtronic or Animas tubing connect to Tandem cartridges. 

BUT…. The other end of the tubing that connects to the infusion site on your body is the same for Tandem, Medtronic, and Animas. And not only is it the same for each pump brand, it is the same for TruSteel and VariSoft sets and the Medtronic/Animas equivalents of those sets. So if I use Tandem tubing attached to my Tandem pump cartridge, I can hook the other end of the tubing onto a TruSteel, VariSoft, Medtronic Silhouette, Medtronic Sure-T, Animas Comfort, or Animas Contact Detach set.

Why is this important?

Many of us struggle to get a sufficient number of infusion sets and that has been my experience on Medicare. But I have a diabetes friend who at one point had lots of extra Medtronic Silhouette sets that he wanted to get rid of. I was happy to help him out. 

Interim Blurb:  I use my pump cartridges and tubing for longer than my infusion sets and often change them independently of each other. I have done this throughout my entire pumping career with Medtronic, Animas, and now Tandem. My old lady skin and tissue require changing infusion sites every two days but it would be expensive and time consuming to change my cartridge and tubing that frequently. Some people consider that heresy but it has always worked well for me.

So how do I use my friend’s Silhouette sets? When I start a new cartridge on my t:slim, I use a Tandem infusion set (VariSoft or TruSteel) and the Tandem tubing that comes with that set. Two days later when I change my infusion set, I have the flexibility to use a VariSoft, a TruSteel, a Medtronic Silhouette or Sure-T, or an Animas Comfort or Contact Detach. And WHY is that? Because the end of the tubing that connects to the pump site on my body is identical for these six types of sets. The blue circles in the illustration below show that the site connectors on Tandem, Medtronic, and Animas are identical.

You may wonder why I keep mentioning Animas since these pumps and supplies are no longer sold in the US. But there are still people occasionally posting on social media that they have Animas supplies to donate. I was the beneficiary of a huge number of boxes of Animas Contact infusion sets that a local woman wanted to dispose of. I explained that she could use them with her daughter’s Medtronic pump with a tubing substitution but she wasn’t interested. These extra infusion sets are providing me with years of protection from Medicare rationing of supplies.

Another reason to understand how infusion sets can be substituted from brand to brand is that if you’re out of town and forget to bring extra Tandem infusion sets, maybe there is someone locally with a Medtronic Silhouette or Sure-T or even some Animas sets.

Interim Blurb: When you change infusion sets more often than cartridges and tubing, you end up accumulating lots of extra tubing. I save most of it because it gives me flexibility. I still have my Animas Vibe pump and could use Tandem or Medtronic sets with it because I have baggies full of Animas tubing. Similarly if I switch to Medtronic in the future, I could use Tandem or Animas sets because I have lots of Medtronic tubing.

I think that this hack will be confusing for many people. But if you understand what I am saying and use either VariSoft or TruSteel sets, you may find it helpful.

Now back to reading the Tandem user manual because I will be starting Basal IQ in a few weeks….

March Miscellany

It is a new month and time for opinionated comments and updates.

It Shouldn’t Be This Hard:  Earlier this week I ordered my February Medicare bundle from Dexcom. I am also in the process of trying to get my 90-day insulin prescription under Medicare Part B. I’ll politely say with no curse words that none of this is going well. I am turning into the “Always-B*tching Blogger” because this stuff is so hard. And it shouldn’t be. I am just trying to do what I did last month and the month before with Dexcom and 3, 6, 9 months ago with Walgreens and insulin. 

I will eventually get out of Dexcom “Processing” limbo and my supplies will be  shipped. Some Medicare recipients have been told that shipments are delayed 7-10 days due to high volume. Long call waits, shipments delays, and moving Call Support to the Philippines have not made Dexcom a popular company in the diabetes online community. ‘Nuff said. And Walgreens will figure out how to get Medicare coverage for my insulin.

At the same time, I like the ring of Always-B*tching Blogger and you can just think of me as ABB!

The Weather:  I have spent winters in Arizona for 15+ years and have never seen snow. That changed last week with 3 inches of the white stuff. Fortunately despite a few downed tree limbs, we had little damage. 

Finally spring has arrived and the Arizona that I know and love is back.

Ground Squirrels:  Although my landscape and flowers survived the snow, I am totally losing the battle with ground squirrels. These horrible creatures are “protected” in Arizona and my exterminator isn’t allowed to poison them. Plantskyd which deters rabbits and deer in Minnesota is impotent. My normally gorgeous March geraniums are decimated. This photo is one day after replanting and an ample dosing of Plantskyd.

The Dog:  All of my readers are kind to read about my dog and her journey through aging and illness. I have come to terms with her limitations and the fact that we only walk half a block twice a day. Otherwise she is happy, eats well, drinks well, poops well, plays fetch with her Bouda giraffe, and wags her tail. Despite me being her caretaker, feeder, medicine dispenser, Bouda thrower, etc., she loves my husband the best and delegates me to #2. Like a teenager, she loves baking in the sun on our back patio.

Animas/Medtronic/Tandem: My Animas pump went out of warranty in late 2016, but I still get emails from Animas and Medtronic about switching to a Medtronic pump system. I am committed to Dexcom and see Tandem and maybe Omnipod as my future. Until Medtronic sensors are reimbursed by Medicare, there is no way that I will take a chance on a CGM that is out-of-pocket. At the same time I have struggled for 2+ years with occlusion alarms on my Tandem X2 and have been back using my Animas Vibe trouble-free for the last 3 months. 

Kinda Whole 30: I have written about Whole 30 and my imperfection at succeeding through 30 days. But I periodically go back on the reset diet and am amazed at how fabulous my blood sugars react to no dairy and no grains. I eat a ton of fruit on this diet and get no spikes. Because I have hosted two dinner parties in the last week, I have once again have strayed from perfect adherence and have had wine. But here is a 24-hour Dexcom tracing that speaks for itself.

Thank-you.  As always, I am grateful for my online diabetes contacts. Keep up the good fight, my friends, and keep in touch. Without you, my diabetes would be really, really hard instead of just really hard. Diabetes social media makes a difference. 

Moving into 2019: Diabetes and Not Diabetes

We’re ten days into 2019 and life is the same. But not really the same. Oh yeah, it’s probably the same but it’s nice to use the reset of a new year to check out where I am. With things related to diabetes. And things not related to diabetes.

Geographical change:

I abandon the cold of Minnesota every year after Christmas and snowbird my way to Arizona for 4 months. I have been here about two weeks and we are finally warming up after super cold temperatures and snow in the mountains. We have had a couple of rainy days but mostly the sun shines and my spirits soar. I don’t have to worry about slipping on the Minnesota ice.

Diabetes Stuff:

In early December I wrote about going back to my Animas Vibe pump due to occlusion alarms and other frustrations with my Tandem X2 pump. I went back to the X2 for my endocrinologist appointment later in December because I want my medical records to show nothing other than Tandem use. Medicare Part B insulin and pump supplies require the serial number of my pump and I don’t want to risk coverage nor do I want to put my endocrinologist in a situation of having to fudge on what pump I am using. Then because I was traveling to Arizona, I wanted to wear my in-warranty pump so that if the second pump in my suitcase was lost because of shenanigans while I was being groped by TSA, it would be the old “worthless” pump.

But very quickly in Arizona, I got frustrated again with occlusion alarms on my Tandem pump. So I ditched it again and am back to my Animas pump. I called Tandem to report that I was having occlusion alarms and indicated that I just wanted that on my record not a pump replacement. Since I have had occlusion alarms with three different Tandem pumps, I am not optimistic that a new pump will make a difference and I don’t want to deal with it until I have access to the Dexcom G6 and Basal IQ. For Medicare users, that is expected to start happening in April. Until then I will continue with my workhorse Animas pump that delivers insulin and never has occlusion alarms or other intrusions into my life. As always, please note that I am a huge fan of Tandem and do not regret my t:slim X2 purchase. I just regret that I am one of the unfortunate souls who has occlusion alarms and struggles to succeed with this pump.

Diabetes, Arthritis, and Lifestyle:

I have previously mentioned that I am giving up extreme hikes of 12+ miles in the mountains to preserve the remaining cartilage in my painful arthritic feet. I don’t want to have foot surgery especially as I am finding that my August hand surgery solved some of my problems but not all of my problems. I have no confidence that foot surgery will turn me into a 25 year old athlete again….

I am finding new activities and am attending fitness classes three times a week. Plus I ride my bike to everything in my community and never use my car or golf cart. So far I have been keeping in touch with my hiking friends and right now for me the social connection is far more important than the athletic connection.

Kinda Broken:

A lot of things in my life kinda work but are kinda broken. This is definitely a #1stWorldProblem section. 

The remote for our main TV does not turn on the tuner or cable box and we must do that manually. If you forget, button pushing randomly turns on some devices and turns off others. When the TV dies, it will require an expensive redo. Until then, we just figure it out and make it work.

My husband broke the battery compartment door of my golf laser gun. To get my distance on the golf course, I push up on the bottom of the gun, push the button, and hope to get the distance. Yeah, it works but is annoying and one more challenge for my arthritic hands. But I don’t play a huge amount of golf and don’t want to invest in a new laser gun. When this one works. Sorta.

The screen lock button on my iPad is stuck. I should get it fixed but right now I added an Accessibility Feature button that allows me to turn off the screen with a few clicks. Annoying but a cheap fix.

The garage door manual close button doesn’t work due to a lightening strike last year. So I have to enter the code which works fine but is an extra kinda-broke step. 

My August hand surgery fixed one of the bad joints in my left hand. But it didn’t fix the joint that hurts when I play golf. And the bad elbow wasn’t even addressed. So a hand brace and an elbow strap make golf possible.

Totally Broken but Fixed:

When I flew into Arizona in late December and picked up my husband’s car at the airport lot, the car screamed brake failure and stranded me in a rocky industrial lot north of the airport. AAA, a loaner car, and an eventual warranty repair got me home in a few hours and the car back in our garage a few days later. Thanks heavens that the brakes failed before I got to the highway.

We have dealt with a quirky HP printer for several years where it always needs to have its network settings re-entered weekly just to print a crossword puzzle. Finally it got an unfixable error message and we now have a new Epson printer that promises to be more reliable. I hope. New printer=$90. Ink for new printer=$70. Argh!

Still Broken:

Yeah. My pancreas is still broken. But what’s new???

Abby the Black Lab is doing okay but is in pain due to arthritis and other health issues. She started laser treatments today and the prognosis is good for easing her symptoms. She is still happy and eats and drinks well. And she looks super cool in the doggie sunglasses required during her laser treatments. But she is an old dog and age is not fixable….

*******

Happy New Year to all of my readers and may 2019 be a good year for you and your family.

A Tandem Vacation

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

I’m not quite sure.

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

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

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

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

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

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

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

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

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

Lots of I Don’t Know’s

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

Who, what, when, where, why? 

Yeah, I don’t have a clue.

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

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

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

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

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

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

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

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

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

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

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

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

Since then I have heard nothing.

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

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

Once again we don’t know the answers.

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

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

Of no information…

and…

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

Until then, just remember the Medicare mantra:

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

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

Thank-you Tandem: A Replacement Pump

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

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

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

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

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

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

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

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

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

Tandem Occlusion Alarms: Crying Uncle

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

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

7/26 Late Morning: Unfortunately my science experiment is already a FAILURE with an occlusion alarm during basal delivery this morning. I totally jinxed myself by publishing this blogpost. In defeat I have already taken off the black washer. I spent 45 minutes on the phone with Tandem and the pump passed all of the tests. Of course it would because the pump works fine most of the time. I even changed my cartridges every 3 days for the last week and a half and got 4 alarms within the last 8 days. The issue has been sent to the local rep and I guess I can try to work with him to get a replacement pump. But I am not convinced that a replacement pump will matter. Why do I get these alarms and so many people don’t???😩😩😩

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

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

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

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

*******

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