Tag Archives: Insulin pump

Days in a Month with Diabetes

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30 days hath September,

April, June and November.

All the rest have 31.

And February’s great with 28

                                     And Leap Year’s February’s fine with 29.

Medicare rations diabetes supplies on a strict 30-day or 90-day cycle. My Medicare suppliers are even worse and tend to think that months have 35 days and quarters have about 95-100 days.

Unfortunately no one has communicated that to my diabetes which trucks along with a strict 24/7/365 (or 24/7/366 in a Leap year) schedule.

I continue to rejoice that my Dexcom G5 CGM is covered by Medicare, but it has been frustrating that Medicare currently requires Dexcom to send out supplies monthly rather than quarterly. The personnel and shipping costs for Dexcom for this monthly distribution are probably substantial and every month seems to leak a few days between shipments. In 2018 most of my shipments were a couple of days to a week late and over the course of 12 months, I only received 11 Dexcom shipments. My guess is that my experience is reflective of that of most Medicare beneficiaries. That means that Dexcom lost one monthly subscription fee for each of us and that is a lot of money for a small company. I was lucky to come into Medicare with a cushion of CGM supplies and I have been okay with constantly late deliveries. I also know about Spike and xDrip where you can reset G5 transmitters to last longer than the software-mandated death of 90-104 days. But some Medicare users have had to go without their CGM when sensors and particularly transmitters have been delayed. There is sometimes an excuse such as backordered transmitters or insurance verification. This month I placed my order on the designated day and the very nice Dexcom rep offered no excuse when she said it wouldn’t ship for another week.

I have been most impacted by pump supplies. I went on Medicare in April of 2017 and I received my 4 boxes of pump supplies like clockwork. Medicare strictly requires that each infusion set will last 3 days and allows no cushion for painful or failed sites. Or aging skin and tissue which require 2 day sets changes. Or steel cannula sets which mandate a 2 day change. In 2017 my doctor’s letter of medical necessity for 4 boxes instead of 3 was accepted and I got the needed supplies. My first order of 2018 was shorted a box and the supplier was unwilling to work with me to override the restriction. I switched suppliers and seeming the override was fine. But they sent the order 10 days late. In infusion set language, 10 days is half a box of supplies for me. Then 3 months later, they wouldn’t send my order until 92 days had passed. Then the next order was another 10 days late. 

I have recently switched to Tandem TruSteel sets and seem to have better insulin absorption than with my previous VariSoft sets. And guess what! You can move the needle part of the set, reinsert it, and tape it down to get another day or two from the set. After two days, 90% of my TruSteel sites are slightly inflamed. So you go, Grandma!. Pull out the needle and tack it into another location. So far I have had no real infections and fortunately am very pain-sensitive and don’t try to extend puffy sites. But we all know that one ER visit or hospitalization would quickly blast past my Medicare-approved cost of $5.91 per infusion set.

Meanwhile diabetes keeps trucking along.

1, 2, 3, 4…..90 days.

If I did not extend infusion sets and have a stash, I would run out of supplies. 

Medicare teaches you to lie. When you call your supplier to renew your 90-day supply, you can’t have more than a week (or is it 10 days?) worth of pump supplies in your D-tub. I would never in a million years be comfortable being down to 3 or 4 infusion sets before ordering more. With Dexcom the policy seem to be more liberal and I can get 5 sensors and 3 boxes of test strips if I am out of supplies. But even a failed transmitter doesn’t seem to get me better than 3-day shipping. My suppliers have failed me in the past and I don’t trust them to bail me out in an emergency. So I always tell them that I have fewer supplies than I really have. Because….

Diabetes keeps trucking along.

I have never sold excess supplies and I no longer share excess supplies. But as someone who has lived with Type 1 diabetes for 42 years, I know that I cannot risk being without insulin for 5 minutes or pump supplies for 5 hours or CGM supplies for 5 days. 

One of my Medicare diabetes online friends once told me that every 90 days she feels as though she is recreating the wheel and resetting her diabetes life. With Dexcom it is every 30 days.

I get it now. That’s the game. And that is the game I play.

A Review of the Tandem t:slim X2

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

The Good Things

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

I like the looks and size of the X2.

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

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

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

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

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

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

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

I really like this pump.

tslim_x2_insulin_pump_front_view_rgb

The Annoying Things

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

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

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

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

Things to Which I am Indifferent

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

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

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

User Error Problems

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

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

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

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

Occlusion Alarms – The Elephant in the Room

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

I have used the Tandem t:slim X2 for almost 10 weeks. In that time I have had 9 occlusion alarms resulting in an immediate stoppage of insulin delivery. The first couple of times I panicked at the shrieking pump alarm fearing that something was actually wrong. Nope. Not once has there been a problem that did not disappear by working my way through the menu screens and pressing “Resume Insulin.” The vast majority of these alarms have been while delivering meal boluses, but not all.fullsizeoutput_1c6b

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

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

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

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

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

Conclusion

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

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

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

Maybe the hip clip will be the solution.

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

*******

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

The Last D-Tech

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Laddie_Head SquareThe last CGM.

The last pump.

The last D-tech before going on Medicare.

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

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

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

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

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

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

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

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

And fear.

*******

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

The Lantus Experiment Part 1

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Laddie_Head SquareIn a recent blogpost I wrote about my plans to experiment with using Lantus along with my pump. Although unusual, this is not a novel idea and is described by Dr. Steve Edelman in a 2004 article as the untethered regimen.

Starting in late November I used Lantus in tandem with my pump for two weeks. Although there were measurable benefits to injecting part of my basal, there were some definite negatives that were specific to my insulin requirements and the type of pump that I use. There were also a few things such as ease of use and expense that demanded consideration.

I started the trial by giving about 75% of my total basal split between two injections of Lantus: one at 7:00AM and the other at 8:30PM. There was nothing scientific about that except those were convenient times and I wanted any Lantus overlap to be first thing in the morning which is a problematic time for me. The balance of my basal was programmed into my pump with a little less through the night and a little more in the morning and evenings.

Let’s start with the positives. For the first couple of days I felt that my blood sugar between meals and overnight was more stable than it had been in ages. The most noticeable effect was in the mornings before breakfast. I often struggle with my BG starting to rise the second I get out of bed. It is not an easy basal fix because I tend to go low in the dawn hours before getting up. Sometimes I take a bolus right after getting up and that helps. But sometimes that bolus makes me go low. And other times I have already started to go high and struggle to get back on track even with boatloads of insulin. With the slight overlap of Lantus at this time, my BG remained stable almost every day until I chose to eat. It was a wonderful result.

The addition of Lantus also minimized BG rises after changing infusion sets. Set changes tend to be a problem for me even though I’ve tried lots of the tricks of the trade to avoid that: extra prime, never change sets in the morning, leave old site in, put new site in a few hours before using, and increase basal rates for several hours. I have never found anything that works every time. Of course nothing works every time with diabetes….

Now for some negatives.

At this stage in my life my basal rates are extremely low. After taking 75% of my basal by injection, I was left with only an average of 0.1 units per hour to be delivered by pump. The total of Lantus and Novolog ended up being a slight basal increase for me and maybe that is the reason I felt as though my BG levels were more stable.

The first problem I had with the untethered regimen was with temporary basal rates which I use on a regular basis. Unlike my previous Medtronic pumps where you can set temp basals either to a specific amount or by a percentage change, the Animas Ping only allows percentage adjustments. With a 0.1 hourly rate, it was difficult to make meaningful changes to my total basal. As I thought of insulin adjustments for my winter hiking excursions, even if I set my pump basal to Off, a reduction of 0.1 per hour might not be sufficient.

Another result of the extremely low basal rates on the pump was that it lost prime three times during the two week period. (Losing prime is an extremely annoying problem with Animas pumps and results in no insulin delivery until you correct the problem.)  If you are in the middle of Target, you don’t really want to reach down your pants to unhook your tubing to re-prime the pump. And that is if you’re lucky enough to hear the musical chime that the pump is no longer delivering insulin. Technically some children use basal rates as low as 0.1/hour and the pump shouldn’t have lost its prime. But it did with both of the reservoirs that I used.

My Lantus Experiment_1

After a few days I began to have daytime lows probably because of the increased basals. So I reduced the Lantus by one unit. Then a few days later I tried another reduction and decided to take it all at night and none in the morning. I increased my pump rates to compensate for the reduction in Lantus. Very quickly I lost the benefits that had been provided by two injections of Lantus. Frankly that means that I didn’t have a clue what was going on anymore.

Although I do not have insurance problems buying both Lantus and pump supplies, it is certainly a more expensive regimen and could be considered to be “double dipping.” Many people justify a pump purchase by indicating that long-acting insulin can’t be customized to fit their basal needs. So here I am saying that the pump by itself isn’t doing the job and I need to add Lantus to the mix….

I also got to the point that the addition of two Lantus injections and the corresponding cell phone alarms added too much complexity and regimentation to my life. Diabetes takes up a huge chunk of my brain power already and I don’t need more nagging demands from it.

So I decided to go back on the pump full-time after the 2-week experiment. I was back to where I was before the experiment. But not exactly. I suspect that increased basal rates were part of the reason I benefited early on and my basal rates are set slightly higher than before. But not a lot because I am trying to avoid lows.

Try not to go too high. Try not to go too low. That’s Type 1 diabetes in a nutshell. Not much has changed, I guess….

This should be the end of the story, but it is not. Please stay tuned for the next installment of the Lantus experiment.

*****

Disclaimer: Nothing I say here should be construed as medical advice and please do not change your insulin regimen without consulting your medical team. At the same time remember that diabetes is a life-long science experiment (Thank-you Ginger Viera!). When things aren’t going well, take some time to investigate different diet plans and alternative ways of dosing your insulin. And no matter what, test your blood sugar often and always carry glucose tabs:-)

The Grouch is Back!

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Laddie_Head SquareTwo weeks ago I wrote a grouchy blogpost about my frustrations with diabetes devices. Things got a little better for a while, but today THE GROUCH IS BACK!

I am sitting here with a high BG that is 99% likely the result of an infusion set change earlier today. I find that no matter what kind of set I use, I more often than not get highs after insertion. I have a grab bag of tricks that I use to avoid the rise, but none of them worked today. I finally gave up and inserted a new set.

These problems are not the fault of my pump, but they are the fault of an insulin system that makes me utterly dependent on the short-acting insulin delivered by my pump. Why should I have to accept high BG numbers for 4-6 hours every three days? I hate these “blameless” highs. I ate a small breakfast today followed by a 3-mile walk. Then I changed my infusion set and my BG climbed from the 80’s to the mid 200’s in the next couple of hours. If I’m going to have a snarky high, I should at least get to have a cupcake or a chocolate-covered donut.

My Dexcom G4 was not an innocent bystander to this mishap. In fact it was continuing its 2 month vacation from accuracy. Because I felt good and the Dex showed my BG to be level, I didn’t test after breakfast until late morning. I was surprised to see a BG of 181. It didn’t make sense so I tested again: 180. I took a correction bolus and calibrated the Dex which was off by 75 points. I was well up in the 200’s before my BG began to fall as the result of several correction boluses and the new infusion set. When my BG finally started to drop, I gave the Dex an extra 30 minutes to see if it would react. Not even close and I recalibrated it downwards. This is the third day of a sensor that has been a problem from the start.

So what am I going to do besides tear out my hair and curse everything related to diabetes?

First I’ll call Dexcom whose reps have been very helpful by replacing sensors and giving advice during the last couple of weeks. I’ve been using new hardware for the last month and the next step might be to try another new transmitter.

Secondly I am going to make changes to my insulin regimen. In a recent post titled Lantus is Lovely and Amazing,  Katy of Bigfoot Child Have Diabetes revisited the idea of her son using Lantus in tandem with his pump. She saw the benefits as minimizing the effects of a pump failure/bad site and a way to give her son more flexibility for water activities and in general some pump-free time. The use of the pump along with Lantus (or Levemir) is called the Untethered Regimen and is best described by Dr. Steve Edelman in a 2004 article. I have used the untethered regimen several times on beach vacations and wrote about it in a July 2013 blogpost.

I have always thought that the untethered regimen makes a lot of sense. An infusion set insertion, a bad site, or a pump problem will have less of an effect with Lantus in the background. Because you take some of your basal with the pump, you still have the ability to reduce or increase basal rates as needed. I’ve had great success when I have used the Lantus/pump combo in the past and as I said in a comment on Katy’s post: “It works so well that I’ve often wondered if I should do it all of the time.”

So that’s what I am going to do. It’s time to experiment with changing up things because I am not happy with where I’m at. I’ve lost confidence in my ability to get good results by doing my normal “right things”. Of course the real villain here is Type 1 diabetes and there is no doubt that I am going through a bad period where minor things are affecting my blood sugar quickly and erratically.

I have ordered Lantus from the pharmacy and will start using the untethered regimen when I have the long-acting insulin in hand. Will I stay on a combined Lantus/pump regimen for the rest of time? Probably not, but I think it will make things easier in the near future. It could be that I just need an increase in basal, but I’m tired of tweaking things and overreacting to highs and lows.

One thing that I always try to remember is that my body does not know the difference between bolus and basal insulin. Formulas and rules of thumb are just that. Sometimes I need to be creative to figure out ways to deal with blood sugar excursions. Please realize that I have used the untethered regimen before so this is not me going off wildly without understanding what I am doing. I see my endocrinologist in two weeks and this will certainly give us something to talk about. She knows that I am a headstrong and self-managing patient and she has never been upset by that. In fact she always emphasizes that this is “my diabetes” and she is my coach.

The final topic for today is related to syringes. Whenever I’ve used syringes in recent years, I have pulled them from a box purchased on 11/15/04. Do you think I should buy new ones???

Syringes_Old

Disclaimer: Nothing I say here should be construed as medical
advice and please do not change your insulin regimen without
consulting with your medical team.

What I Need/Want/Deserve

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Laddie_Head SquareOn Sunday April 6 The New York Times published an article by Elisabeth Rosenthal titled Even Small Medical Advances Can Mean Big Jumps in Bills.  A friend without diabetes alerted me to the article and I read it along with the comments. For the most part I avoided social media for the rest of the weekend and had time to stew over my reactions to the article.

On one hand it was good to see Type 1 diabetes highlighted by the media.  Parts of the article were correct, but other parts made me feel uncomfortable and marginalized. I work hard to control my diabetes and I have been quick to give credit to my pump and CGMS for greatly improving my health and quality of life. I have no major complications and after my hospitalization at diagnosis in 1976, I have never been hospitalized except for childbirth. I thought that was a good thing.

Although I realize that my day-to-day medical expenses are high, I have been a “cheap” patient when it comes to acute care. Even my chronic care expenses do not surpass the total of my insurance premiums and my high deductible. Insurance companies are not making money on me, but they’re not losing their shirt either. That doesn’t mean that I could have gotten along equally well without insurance. My biggest financial benefit of having insurance is getting access to insurance-contracted rates. The insanity of our healthcare system is illustrated every time I see an EOB (Explanation of Benefits). Without insurance I would pay two or three times what my insurance pays for any procedure, lab test, or office visit. But that’s a topic for another day.

Most of you have already seen this excerpt from the article:

That captive audience of Type 1 diabetics has spawned lines of high-priced gadgets and disposable accouterments, borrowing business models from technology companies like Apple: Each pump and monitor requires the separate purchase of an array of items that are often brand and model specific.

A steady stream of new models and updates often offer dubious improvement: colored pumps; talking, bilingual meters; sensors reporting minute-by-minute sugar readouts.

 If you want to understand at my outrage/disappointment/fear at these comments and the whole article, please check out Kelly Kunik’s letter at her blog Diabetesaliciousness.  For some other well-thought out responses to this article, check out Amy’s post at Diabetes Mine and Bennet’s letter at Your Diabetes May Vary. Or just explore the DOC and you’ll find other great posts on this subject.

I have a few things to confess talk about here. Throughout most of my diabetes career, I have been considered a model patient who is compliant and all of those other adjectives that can be tossed about. One of my endos once told me that “You can get anything to work”. In a sense, I can and have. But the idea of going back to NPH and Regular or a once-a-day Lente injection is terrifying. I rarely make it through a night without at least two or three alarms from my Dexcom that my BG is too high or too low. I use my pump for multiple .25 or .375 corrections every day. That’s impossible with a pen and extremely difficult with a syringe.

But I could survive if I went back to syringes and vials. I don’t know whether I would have more complications than if I had never gone on the pump. I have had approximately the same A1c while pumping that I had with Lantus and Humalog injections, but my highs are not as high and my lows are not as low. I spend much more time in my “target range” and I feel much better. I believe that I am safer because my insulin delivery is more precise and predictable.

Although I have used various CGM devices for over 5 years, the Dexcom G4 has been the most life-changing. In the last year and a half with my G4, I have not once needed my husband to help me with a hypoglycemia episode. I have not wandered around a strange hotel room in the middle of the night desperately trying to find something to eat and then trying to figure out how to chew and swallow. I have hiked hundreds of miles without requiring a Glucagon injection. Bad golf scores have been the result of my bad golf swing and not the result of BG readings in the 30’s and 40’s. My only interaction with firemen/paramedics has been taking my grandchildren to see the firetrucks and ambulance.

Is a pump and/or CGM a luxury “gadget” for me?  The first night in July without my Dexcom when the transmitter died, I woke up with a BG reading of 37. But at least I woke up. If my pump is denied by insurance, will an uninsured T1 diabetic get access to insulin? If I had to choose between my pump and my iPhone, what would I choose? (My Pump.) Should children get access to artificial pancreas technology while senior citizens can’t get CGM coverage by Medicare? If I lived in a country such as the U.K. with national health insurance, would I even qualify for a pump or CGM? What would my current health status and the cost of my care be if I were still checking my urine to determine my BG control and taking only one injection of Lente per day as I did in 1976? Would I still be alive?

I don’t know.

These are important questions.  As I get closer to Medicare age and our country moves closer to universal healthcare, I realize that not every decision related to my diabetes care with be in my favor. No healthcare system will ever have enough money to give Cadillac care to every individual at every stage of life with any health issue and despite unknown return on investment for that care. Some of the toughest questions that must be addressed are:

  • How do we measure value?
  • At what point are increased costs not justifiable in comparison to increases in quality of life and health status?
  • Are these decisions death panels or a reasonable allocation of limited resources?
  • Is it short-sighted to limit access to pumps and CGMS and then willingly pay for dialysis and amputations?
  • How do we decide between keeping 16-week premature babies alive while denying tests strips to millions of people with Type 2 diabetes?
  • Should there be an age limit on joint replacements and organ transplants?
  • How can drug and device companies develop better technology and improved pharmaceuticals if these products are not reimbursable expenses?

Measuring ValueI think that each one of us could add multiple questions to that list. The patient profiled in the NYT article concludes that “You want me to be able to afford good treatment…Because otherwise I end up disabled.”

Does anyone care?

Scary times, my friends with Type 1 diabetes.

Two Updates to TSA Roulette

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My previous post discussed the stress of going through TSA airport security when traveling with an insulin pump and how it can be like playing roulette.  I have two updates to that post.  One recounts a recent airport security experience.  The other describes a special TSA program for people with disabilities and medical conditions.

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Laddie_Head SquareRandomly Not Diabetes

Late last week I returned home from an international family vacation and had an ironic adventure with airport security.

My trip out of Minneapolis was uneventful with a routine pat-down and hand swabbing.  Although the TSA agent at the AIT (Advanced Imaging Technology) scanner told me that “everyone goes through with their pumps”, he did not argue when I refused to do so.  The pat-down was efficient and the female agent was professional and kind.

My husband used online check-in for the trip home.  It went smoothly for him and the  children and grandchildren. But he was unable to check me in online.

At the airport I got my boarding pass with no problem and I assumed that the online  glitch was a thing of the past.  No such luck.  When my passport was scanned at the security desk, it was immediately confiscated along with my boarding pass.  I was instructed to go through the metal detector and then retrieve my documents from the agent on the other side.  That retrieval involved having my purse and backpack inspected compartment by compartment and item by item.  This was followed by a pat-down and hand swabbing.

Passport and boarding pass in hand, I headed for the gate.  When my boarding pass was scanned by the Delta agent, I was pulled aside for another search of my possessions along with another pat-down.

If you travel much, you know that I was just a passenger selected randomly by the TSA for enhanced security screening.  It was a scenario unrelated to diabetes that I neglected to put on my TSA Roulette Wheel.

After going through customs and retrieving my luggage in Atlanta, I received another security pat-down because of my insulin pump.  It was a fitting end to a three pat-down day for a Type 1 grandma traveling with a baby, a screaming 2-year old, a 5-year old, three adults, a group total of ten pieces of carry-on luggage, and an insulin pump.

TSA Cares

Yes, despite occasional evidence to the contrary, they actually do care and have a program called TSA Cares to prove it.

TSA Cares is designed to help people with disabilities and medical TSA Logoconditions navigate the security screening process.  The entry into the program is through a help line at 1-855-787-2227.  It is recommended that passengers call the help line 72 hours before a trip.  For many people the phone call will provide all the information and assistance necessary.  For others with more complex needs, the help line agent can arrange for a Passenger Support Specialist (PSS) to personally escort them through the screening process at airports with the program.

Meri Schumacher of Our Diabetic Life is the mother of 3 boys with Type 1 diabetes.  She wrote a very informative blog post about her recent experiences with Patient Support Specialists through TSA Cares.  She was very emphatic that the PSS program is at risk for being discontinued if more people do not use it.

So check out the program and give it a try if you think it would be helpful to you.  And be sure to spread the word to friends or family members who might benefit from TSA Cares and a Passenger Support Specialist.

Playing Roulette with the TSA

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Laddie_Head SquareThere are a couple of certainties in my life. If I want to travel, I need to fly. If I fly, I need to go to the airport. If I want to get to my airplane, I must go through a TSA security checkpoint. Sounds pretty simple, doesn’t it?

Like most people who travel with an insulin pump, my stress level rises as I approach the TSA checkpoint. My normal strategy is to stick my pump inside my waistband and wear a shirt long enough to hide it from view. If I see that I will be screened with a traditional metal detector, I rejoice because I have a good chance of walking through it without alarms and therefore no pat-down. Occasionally I set off the alarm and I’ve never been able to figure out why sometimes it alarms and usually it doesn’t.

If I see an advanced imaging technology scanner, I know it is a certainty that I will have to declare my pump and receive a pat-down. Some TSA personnel will tell you that you can wear your pump through the scanner, but I choose to follow the directive of my pump company that the pump should not go through the scanner.

I hate pat-downs and feel somewhat violated by them. I have been lucky that every pat-down agent has always treated me politely and I do my best to relax knowing it will be over soon. I live in total fear of having the horrible TSA experience that fellow Type 1 Kelly Kunik experienced in April of this year.

I once flunked the swabbing of my hands and that resulted in a search of my carry-on luggage as well as an extensive pat-down in a private area. Oops, I mean an area behind a partition although I think they also searched my private areas. Rumor has it that hand lotion can cause a false positive, so I try to remember to never use it before traveling. Kelly Kunik thought that soap might have been the culprit in her swab test.

TSA RouletteBasically the TSA experience is a crapshoot. It’s a roulette game where you spin the wheel and what you get is what your get. Earlier this year there was an online petition urging for consistency in screening of people with diabetes. I have read that the TSA values inconsistency and I think it is unlikely that we will see much change.

My husband travels frequently and qualifies for TSA PreCheck. This is a program that according to Delta’s website is “an intelligence-driven, risk-based screening initiative through which eligible passengers are selected for expedited screening.” He goes through a special line at Delta checkpoints and walks through without removing his shoes, belt, or liquids and computer from his briefcase. It seems to me that there could be a program where people with medical devices, artificial joints, etc. could pre-register in some program that would help us move through security in an easier and more predictable way.

Every time I am selected for additional screening, I marvel at our security system where senior citizens in wheelchairs or with artificial joints and people with insulin pumps are being pulled aside every time that we travel. At the same time I read of people who have gotten guns and knives through the checkpoints. Not to say that a granny can’t be a terrorist, but in general, someone is wasting resources here.

I’ll be traveling later this week. Time to play roulette with the TSA!