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.

*******

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.

Fighting the Diabetes Chocolate Demons

This post is dedicated to my friend Carol. I met Carol through my blog and we periodically email each other talking about Type 1 diabetes, Medicare, and stuff like that. She doesn’t live near me and I don’t know if we will ever meet in person. But we share the journey, the joy, and the struggle of women aging with Type 1 diabetes. Thank-you for being part of my life, Carol.

Dear Carol-

The anguish you described in your latest email about chocolate, post-dinner eating, and making “bad” decisions probably rings true for almost everyone with diabetes. In fact it might ring true for every human being who has access to potato chips, chocolate, cigarettes, and/or alcohol. Unfortunately for those of us with diabetes, we have BG meters that provide a visual reminder of how often we have failed to live up to our expectations.

I am good at finding temporary solutions to the problem of evening snacking. I long ago gave up hope of ever totally eliminating it. Sometimes I play games that work for a while. For example I package something like Hershey’s Kisses in plastic bags of 15g carbs. I put them in the freezer and allow myself 1 bag each evening. That works for a few weeks before I realize that nothing is stopping me from grabbing a second or third bag of chocolate. Then I play around with my digital calendar and add a daily resolution event of “No cr*p eating after dinner.” When I am successful, I change the color of the event from a boring gray to a pretty color. It’s stupid, but once again it works for a couple of weeks. Sometimes I put a big “No!” sign on the refrigerator or snack cupboard, but this only works for a day to two. I have a couple more games that frankly are reminiscent of Stupid Pet Tricks…. Another thing I do is have a cup of caffeine-free tea after dinner. That burns up some of the time when I might have the urge to start snacking. Going for a walk after dinner helps but I am usually so active during the day that I don’t want or need more Fitbit steps. Some people learn to knit or crochet and others play computer solitaire to avoid snacking.

I understand some of my triggers for chocolate orgies. Snacking in the late afternoon sometimes leads to skipping dinner and that’s a recipe for disaster. Too much wine before and during dinner definitely ruins my willpower and I don’t keep it in the house anymore. I think my biggest frustration is that I can convince myself that the “correct” insulin bolus will take care of the snack food and I’ll just have a couple of cookies. But it doesn’t work. Never, never, never. It doesn’t work.

Recently I’ve had a string of successful evenings with a Nature Valley Protein Bar (Peanut Butter Dark Chocolate—14g carbs) along with a mug of warm FairLife milk (6g carbs). You can buy the bars in boxes of 5 at the grocery store or in the big boxes of 30 at Costco. I’ve been known to eat two bars, but usually one is enough and the addition of the warm milk extends the enjoyment time of the snack. A friend recently told me about FairLife milk which is ultra-filtered and has half the carbs and sugar of regular milk. I like it much better than almond milk and the impact on BG is minimal.

I know that periodically I am going to relapse from whatever temporary solution I have found and I try to forgive myself for those times. At the same time my slip-ups drive me crazy because my overnights are so much better when I don’t lose the evening munchie battle. My Dexcom CGM doesn’t alarm to lows in the early night hours followed by 2:00AM highs as the junk food digests. My fasting BG in the morning doesn’t randomly pingpong between low and high. A  reasonably-sized evening snack leads to a higher percentage of “good” overnight BG numbers with only minor low and high excursions. My fasting numbers tend to be more stable. I sleep better. I feel better.

Why can’t I do what I know is good for me and what makes me feel better???!!! That’s the million dollar question.

Carol, you described the anguish over our lack of perfection so well. After recently pouring your heart out to your endocrinologist for help, you wrote:

From eating the stupid chocolate I had to have. It is totally the opposite of who I am all day – so disciplined. I’ve asked the Endo for help with the chocolate — counseling for why I need comfort food when I know it’s bad for me? I asked her why I would be 90 after dinner and yet have to have chocolate that I know will spike me to 190?

You call it “Diabetes Distress” and that’s as good a name as any. I have no great advice for you, but I have a lot of understanding. I hope that the next time you beat yourself up over chocolate that you remember that you are not alone. There is no one with diabetes who has ever done it “right” all of the time. Food is a complicated issue as we have to eat to live. Food is our medicine for fighting lows and balancing blood sugars. Foods like chocolate are enjoyable and taste good. Food, especially food with sugar, is addictive. For me there is no doubt than none is easier than one. One cookie and one piece of chocolate don’t live in my world and moderation is often an elusive goal.

Diabetes can easily become a disease of disordered eating, but I think that our distress is not just the chocolate. It’s the relentless pressure of diabetes which is easier to picture as a pile of candy bars than the inner demon of inadequacy as we try to mimic a healthy pancreas.

Carol, it is easy for me to pat you on the head and say what a good job you are doing with your diabetes. Because you are. But it’s harder than that and we can’t pretend that it isn’t. I hope that you may find some answers through counseling. Meanwhile don’t forget to be kind to yourself and remember that you are not alone in your struggles or your successes. If you learn some inner mantras or even Stupid Pet Tricks to tackle the problem, please share. Until then, keep up the good fight.

Laddie

Countdown to Medicare with Type 1 Diabetes:  1 Month / Growing Old with T1D

Laddie_Head SquareI don’t have much to write about this month when it comes to Medicare. I am signed up for Medicare Part A and Part B. I have enrolled in a Supplemental Plan offered by BCBS of MN. I have selected an AARP Walgreen’s Part D drug plan. For better or worse I am ready to tackle Medicare on April 1.

Turning 65 years old and going on Medicare is a milestone in the progression of growing old. It is impossible for me to make this transition without thinking about growing old with Type 1 diabetes. Below you’ll find some of my thoughts.

The idea of “phases of aging” makes sense to me and I am moving into the “young-old” subgroup described in a Lumen Learning sociology course:

The United States’ older adult population can be divided into three life-stage subgroups: the young-old (approximately 65–74), the middle-old (ages 75–84), and the old-old (over age 85). Today’s young-old age group is generally happier, healthier, and financially better off than the young-old of previous generations.

As a young-old person who has lived with Type 1 diabetes for over 40 years, I am the most confident and empowered in relation to my diabetes than I have ever been. That is not going to change on April 1.

When I was diagnosed in 1976, I knew nothing about diabetes and had access to only a few books and magazines. Today the Internet has opened doors to scientific knowledge, professional recommendations, advocacy issues, and the cumulative knowledge of thecountdown-to-medicare-1-month Diabetes Online Community (DOC). Although I don’t blindly follow online diabetes advice and have never consumed okra water, I strongly believe that my fellow people with diabetes (PWD) have taught me almost everything I know about Type 1 and have motivated and empowered me to succeed. Continued learning about diabetes won’t go away just because I get a Medicare card.

I have lived a privileged diabetes life and have never worried about access to care. I understand that I will have a huge learning curve when it comes to getting supplies and medications under Medicare. I am not yet losing sleep over potential roadblocks although I know that it is naive to think that there won’t be any.

There is no doubt that improvements in both insulin formulations and technology have allowed me to reach age 65 in reasonably good health. I can’t envision what my health status would be (or if I would even still be alive) had I continued on my 1976 insulin regimen of one injection a day and no home BG monitoring. Insulin pumps and CGMs have exponentially increased the quality of my life. I can’t even begin to hypothesize on how and if Medicare will cover future diabetes tech such as artificial pancreas systems.

In some ways I am living with a different diabetes than at other stages of my life. Although hormones never completely disappear, they don’t rage as much for me anymore and are usually more predictable than when I was younger. In Figure 5-2 of Think Like a Pancreas, Gary Scheiner shows graphs of “typical basal insulin levels by age group.”

fullsizeoutput_19f0

The thick line is for ages 60 and older and shows a decrease in total basal insulin along with a sharper rise in insulin needs in the early morning hours. I am experiencing both of those changes and they didn’t make sense to me until I saw Gary’s chart. Most of my bolus ratios have remained the same so far.

Hypoglycemia unawareness is a mixed gift bag as I move into my senior years. On one hand, I feel better because I don’t get the sweats, shakiness, blurry vision, and insatiable hunger of my younger years. I also don’t tend to over-treat lows and multiple bowls of Frosted Flakes at 3:00am are a distant memory. At the same time I know that hypoglycemia is a huge problem for seniors with diabetes and my risks for falls, hospitalization, and permanent disability resulting from severe lows will increase. Knowing that Medicare will soon be covering CGMs for seniors is a huge relief, but I won’t consider it a done deal until I am approved under the not-yet-established CMS guidelines.

When I look at my diabetes, I am comfortable believing that I will be in control of my diabetes throughout my “young-old” years and hopefully well into my “middle-old” years. It is likely that I may require help with care at some point in my “old-old” years…. That terrifies me because I don’t trust anyone else to take care of my diabetes and my biggest fear of aging is losing independence.

Aging is a process. My life isn’t going to be much different on April 1 than it was on March 31. I’ll still have type 1 diabetes and will continue to test my blood and take insulin. I’ll still have arthritis and sometimes I worry more about that than diabetes. But one change that will happen is that I will finally start using the red, white, and blue Medicare card stashed in my wallet. Wish me luck.