Midnight Two and Five

Laddie_Head SquareThe big thing around the DOC these days is the NY Times Op-Docs feature titled “Midnight Three & Six.” This twelve minute video was filmed by Joe Callander and funded by the Sundance Institute. In remarks accompanying the film, Callander begins the story as follows:

For the past eight years, the Chamberlain family in Fort Worth, Tex., has been coping with a nightmare all parents fear: In 2006, their daughter, Grace, was given a diagnosis of a life-threatening disease. Grace has Type 1 diabetes, for which there is no cure. Now 15 years old, she has endured approximately 34,000 blood tests, 5,550 shots and 1,660 medical tubing injections to keep her alive.

Later he writes:

But I was most struck by the realities of the family’s daily routine. Grace’s mother …. told me about nights punctuated by alarms to get up and check her daughter’s blood sugar, at “midnight, 3 and 6.” That timetable became my structuring device for making this film.

By Sunday afternoon there were 165 comments on the documentary. Some claimed that the Chamberlain’s family mirrored their life perfectly. Others labeled it as an overly melodramatic depiction of Type 1 diabetes and criticized the parents for how they care for their daughter. My guess is that all of the comments have some merit and mirror fragments of life with Type 1. To put it all in perspective, you should read the comment by Grace’s father who defends/explains his family’s experience and concludes that the film is an artistic peek at one family’s life with diabetes, not a factual textbook. He writes:

finally, please remember that a very talented, creative film maker asked us for a behind the scenes look at our family situation with T1D; then , he crafted a 12 minute film to encapsulate his subject matter in an artistic way. The film is getting a huge response, and we are happy about that…including the disagreements!

If you haven’t seen the film, watch it here. Be prepared to be disturbed whether or not you agree with the depiction of Type 1 diabetes. If you have time, read the comments.

The purpose of this blogpost is not to give my views of the documentary, but rather to use the title “Midnight Three & Six” as a starting point to discuss how often Type 1 diabetes and a good night’s sleep are incompatible.

I have had Type 1 since 1976—diagnosed at age 24. Parents were never involved in my T1 life and no alarms were ever set to test my blood sugar. Of course I had many years of diabetes before I even had a home BG meter. I also lived with diabetes before the Internet and as a somewhat ignorant young adult never considered that I might not wake up in the morning.

Although they were not an every night occurrence, I have vivd memories of horrific lows in the middle of the night. Waking up sweaty, shaky, and disoriented. Staggering downstairs for orange juice followed by multiple bowls of Frosted Flakes and milk. When I was lucky, I was able to find a dry nightgown before returning to bed, but it was always a struggle to avoid the sweat-drenched tangle of sheets where I had previously slept. I remember the freezing cold that permeated my bones and the inability to get warm even with the electric blanket on high. I can still appreciate the buzz as sugar raced through my body reviving my numb limbs, lips and brain. Although I probably woke the next morning with crazy high numbers, I have no memories of that.

As I aged, it became rare to sleep through the night without at least one trip to the bathroom. I began testing my BG when I got up. If it was low, I’d go back to bed with a couple of Werther’s candies in my mouth. It was many years before it became part of my Sleepy Dwarfwheelhouse to take an injection to bring down a high. I never woke at night without diabetes being the first thing on my mind.

I now live with a CGM. You would think that this watchdog would enable me to sleep soundly, but sometimes I think it is the exact opposite. There are many nights that the Dexcom is on the Midnight 3 & 6 schedule along with Grace’s parents, or more accurately for me, the Midnight 2 & 5 shift. I struggle with eating too many snacks through the evening. Sometimes it’s junk food. Other times by trying to avoid carbs, I eat things like nuts and cheese. It doesn’t matter which. The pattern is to go low early in the night from too much insulin and then go high at 2:00AM. Although I try to be conservative with corrections, usually the highs are followed by lows in the predawn hours. My G4 definitely earns it keep by alerting me to each one of these out-of-range numbers. Since I am confessing my sins, I might as well admit that I eat glucose tabs and dose insulin based on Dex numbers all night long.

On Friday after being frustrated with the current sensor, I ripped it off at bedtime and decided to splurge with an uninterrupted night of sleep. I had eaten nothing since an early supper, had no IOB, and felt confident that nothing too disastrous would happen. I think that it was the first night in two years that I had gone to bed without a functioning CGM (except for a few times when my transmitter died and I had to wait for a replacement).

I slept marvelously. No, I slept marvelously until 5:56AM when my Animas Ping starting singing Für Elise signaling a pump alarm. It turned out that I had not pushed any buttons for 12 hours and had triggered the Auto Off safety feature. A button push or two and insulin delivery resumed. Back to sleep. Back to sleep until 6:12AM when a twinkle alert indicated that my pump had lost prime. (Losing prime is an extremely annoying problem with Animas pumps and requires that you unhook your infusion set and prime a few units of insulin to restore pressure in the insulin delivery system.) A trip to the bathroom, bright lights, my infusion set reattached, and I was awake for the day.

Although my diabetes control is “good,” the fact that I rarely have a night without Dexcom alarms would indicate that I have problems that need to be addressed. I have a list of things that could be improved. In the meantime, if there are any parents who would like to take the Midnight 2 & 5 shift and start testing my BG, dosing insulin and giving juice as needed, I’m taking applications….

Why I Don’t Download

Laddie_Head SquareThere are many discussions around the DOC about data interoperability and ownership of data. There are also survey results that indicate how rarely most people with diabetes download their devices.

Last week I had an endocrinologist appointment. I know that I am guilty-as-charged about not downloading my devices very often. But I always do it prior to endo appointments. I consider data extraction a tedious process and it seems to take forever. To figure out if the download time is a legitimate excuse or whether I am just a slacker, I decided to chart my experience.

10:38  I gather up the necessary cords and my two Freestyle meters. My pump and CGM are of course close by in my pockets.

10:40  I prepare my Animas Ping pump for the download. I change the Display Timeout from 15 seconds to 1 minute. If I don’t do this, the pump will sometimes turn off before the Diasend Uploader can start reading its data. Then I suspend the pump and unhook it from the infusion set. I open the Diasend Uploader and attach the wireless upload device to my computer.  I start the download which is always a slow process. After the pump is downloaded, the Diasend uploader asks for my login info and I type it in.

10:47  I have finished the download of my pump and I download Freestyle Lite Meter #1 to Diasend. Quick and and easy.

10:48  I download Freestyle Lite Meter #2 to Diasend. Once again, quick and easy.

10:49  I plug in my Dexcom G4 receiver. The download to Diasend is simple and finished within a minute.

10:50  I follow the Uploader prompt to go to the Diasend website and sign in.

10:51  While the Dexcom receiver is attached to the computer, I open Dexcom Studio and download the CGM data to the Dexcom program.

10:53  All of my devices are downloaded and I cram the cords back into my “Diabetes Download” handy-dandy storage box.

I have invested 15 minutes in my diabetes download project. If I didn’t have an endo appointment and just wanted to view the reports on the computer, the bulk of the work would be done. Both Diasend and Dexcom Studio do a good job of displaying reports clearly and quickly.

But I want to save some of the reports to my “Medical Reports” folder and print them out for my doctor to review.

10:54  In Dexcom Studio I open the Summary Report in Microsoft Word using the last 14 days of data and save it to my computer. Then I print it for my endo. I have felt that I have really been struggling lately with my diabetes, but the reports look quite good. When you’re stuck in the trees, life can look bad although the forest view is quite respectable.

10:57  I go to the Diasend website to print reports. The Compilation Report is the most useful summary because it merges data from my pump, meters, and CGM. I also like one of the CGM reports. I save both to PDF.

I am going to digress here and talk about how some endocrinologists hate Diasend reports. They look fabulous on the computer and many doctors view them that way. But when they are printed, the charts are so small that they are almost unreadable. HEY DIASEND! NOW THAT YOU FINALLY DOWNLOAD ALL OF MY DEVICES, PLEASE PRINT THE REPORTS SO THAT MY DOCTOR CAN READ THEM!  

We own a full version of Adobe Acrobat (a different program than the free Adobe Reader) and I am able to crop the Diasend reports and enlarge them. They are still small but better than the standard reports. My endo will be able to read them. I print the reports and save them to my computer.

11:08  My pump and CGM are back in my pocket. Freestyle Meter #1 is in my purse and Freestyle Meter #2 is on the floor by the stairs to be returned to the master bathroom on my next trip upstairs. (I never put anything on the stairs because my first frozen shoulder developed after a fall from stepping on shoes left on the stairs.)

So here’s a summary:

15 Minutes: That’s what it takes to download my diabetes devices to Diasend and Dexcom Studio. If I didn’t want to print anything, various reports are immediately available.

30 Minutes: That was the total time to download my devices, print several reports for my doctor, and save those same reports to my computer. Obviously I spent more time than other people might.

15 minutes. 30 minutes. That is why I don’t download all of my diabetes devices very often.Download Time

Okay, now it is time to stop making excuses. The data from my Dexcom G4 is by far the most useful information I have when it comes to evaluating blood sugars. I can download the receiver to Dexcom Studio in one minute. It takes another minute to download to Diasend. And maybe another minute to find the download cord and open the computer programs. So from start to finish it’s two or three minutes. I can even save a minute by downloading to only one program instead of two.

So what have I learned from my time study? I have learned that it would make sense to start downloading my Dex G4 on a more regular basis. It’s super quick unlike the time and effort that it takes to download four devices. I can download my G4 to Diasend (unfortunately not yet to Dexcom Studio) on my MacBook and that is even faster and more convenient than with my Windows desktop.

Will I change? I actually think I might. (Just for my Dexcom, not the other devices)

One last question: If I download my data, am I supposed to look at it?

Musings on Approaching Medicare

Sue_HeadSquare2I will turn 65 in May, which means I will be Medicare eligible. I have several friends and family members who thought going on Medicare was a wonderful blessing, because they now had affordable health insurance that also covered extras like well exams and gym memberships. Of course I think that Medicare is a blessing for seniors. However, for Type 1 diabetics who have had use of a continuous glucose monitor (CGM) to give them a continuous readout of their blood sugars, thus minimizing hypo and hyperglycemic episodes, this often meant that they lost whatever health insurance plan they were on, and were forced to go on Medicare. Unfortunately, Medicare presently does not cover CGM’s because they consider it “precautionary equipment”.

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

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

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

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

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

HE FINALLY GOT ONE!

Sue B_Head SquareI have been advocating for over two years for Medicare to cover a Continuous Glucose Monitor (CGM) for my husband Marc. Synopsis – he had been covered for the CGM when he had private insurance through his employer, but when he turned 65 and became Medicare eligible, and needed a replacement CGM, it was denied. Medicare considers the CGM precautionary and therefore, in their opinion, not necessary. Of course, those who desperately need one disagree with this. The first denial came in August of 2012 and shortly thereafter, we started the long and exhausting appeals process. When we got to Level 3, a hearing by an Administrative Law Judge (ALJ), it took almost nine months after our June 26, 2013 hearing for the Judge to render an UNFAVORABLE decision. We decided to go on to Level 4 which is a hearing with the Medicare Appeals Council (MAC). They have the power to overturn the Judge’s decision. This Appeal was submitted to them in April of 2014. We are now in the 5th month of waiting for the Council to make a decision. The Appeals process is almost like watching a tortoise cross the road. It’s very, very slow.

In the meantime, Marc, after 45 years, decided to apply for VA benefits. He had served in the United States Air Force for four years but had never thought of getting any benefits through the VA. From the time he submitted his first application to when they processed him in took almost two years (nothing we do happens quickly). Finally, in May of this year, he became a part of the VA. He had to go through all types of exams, one of which was with the VA endocrinologist. In checking his A1c and hearing about his problem with hypoglycemia unawareness, she definitely thought that he needed a CGM and prescribed one for him. However, as with Medicare, we were told that the wait to get one was 1 – 2 years. For some reason, and I can only guess it was because he had so many instances of blacking out, she went to bat for him and I can finally say, HE HAS A CGM! Two weeks after speaking to her, he received an email from Dexcom that his CGM was on its way. Four days later it came.

To say that we are thrilled is putting it mildly. Our two years without a CGM are finally over. For myself, I can now be at peace during the day when Marc at work knowing that if his sugar starts to drop rapidly, he’ll get those warning beeps. And I welcome those beeps at night (which used to drive me crazy) because now I can sleep better (in between the beeping) knowing that we’ll have time to correct the situation before I have to go running for the Glucagon.

Dex Box Hooray

When I became an advocate for his CGM, I made a commitment to continue to fight for Medicare to make a change in their guideline even if Marc did eventually get a CGM, whether through Medicare or some other source. I intend to keep that commitment and will continue to work towards that goal. To that end, we are letting the Level 4 Appeal play out even though, if we are fortunate enough to get a FAVORABLE decision, we can no longer get a CGM through Medicare. It is our hope that if anyone who is thinking of going through the process will see that it is possible (I hope) to get a good decision and soldier on. No one should have to go through what we’ve gone through in the past two years to get a piece of equipment that is so life-saving.

If you are a Veteran and have not joined the VA, you might want to consider applying for benefits whether you are a diabetic or not. In the past four months, not only have they covered Marc’s CGM and sensors, but also Symlin, which is a synthetic aid in lowering blood sugar and is quite costly, his cholesterol medication, syringes, etc. In a future blog, I will give you a few hints about joining that might make it easier to navigate the VA, one of which is to contact your local County Veterans Service Officers. They are most helpful.

A Blogging Vacation

Laddie_Head SquareI’ve been on a blogging vacation. It wasn’t intentional, but one missed post turned into another missed post. And another missed post. Before I knew it, my twice weekly postings had turned into none. Blogs aren’t supposed to be a burden, so I’m not feeling too guilty. Unfortunately my blogging vacation has been accompanied by a lapse in my diabetes care.  A few (well, maybe a lot of) bad decisions along with infusion set problems have resulted in a series of days (weeks?) with less than optimal numbers.

My diabetes care is never perfect, but for the most part I do pretty well and spend a lot of time in my “target range”.  For much of the last year I have had success with a low carb diet (most of the time) and an insulin regimen that has controlled my morning blood sugar spikes (most of the time). So what has thrown everything out of balance?

A little bit of this and a little bit of that.

Balance is the hardest part of Type 1 diabetes. Without a functioning pancreas, our bodies have no sense of equilibrium. We live on a tightrope where good numbers are a small step from catastrophic lows and higher numbers seem to send the glucocoaster spiraling out of control. It’s the reality that everything today is connected to everything yesterday and will influence everything tomorrow.

I eat a couple of chocolate chunk cookies. Okay, they are the (huge!) chocolate chunk cookies (delicious!) from Costco. I take a boatload of insulin and my BG numbers seem to stay in check. But at 2:00AM my Dexcom screams that my BG is high and rising quickly.  I program a correction dose into my pump and unfortunately wake up with a low at 6:00AM. Two glucose tabs and before I know it, I’m back to 180 and rising quickly. I test frequently and take enough insulin to vanquish two plates of pancakes, a banana split, and half a loaf of Wonder Bread. But wait, I didn’t eat any of those things. I either ate nothing or my normal 17 carb breakfast of Greek yogurt and apple or blueberries. The dog walk that usually prevents huge post-breakfast BG spikes is rewarded with numbers in the 200’s.

My endocrinologist claims that overnight lows result in hormones that ultimately cause highs. I think she’s right because the more overnight lows I have, the more daytime highs I see. The more I correct the highs, the more I end up low. Dexcom tracings that resemble the Himalayas multiply rapidly and refuse to give way to somewhat gentler blood glucose slopes.

The cookies are long gone and the sweet, yummy, chocolaty taste is a pleasant guilt-laden memory.  The problem is that my diabetes remembers the indiscretions and even when I’m eating a judiciously low-carb meal, my body is quick to spike and quick to crash. Add frustration and diabetes burnout to the mix and it’s hard to get back on the straight and narrow.

Dexcom Tracing

Mixed in with things I can control are things like infusion set failures. I have used angled sets (Silhouettes and Comfort Shorts) successfully for most of my pumping life. Skin problems, inflammation at pump sites, and insertion pain have motivated me to explore other types of sets. In my last supply order, I included a box of Insets and a box of Cleos. I started with the Insets and loved the pain-free insertion.  Since I weigh a little more than the last time I used 90-degree sets, I was encouraged by the performance of the first 9 sets with no pain, no failures, and all of them lasting 3 days. Then came #10. It was a blast from the past with an absolute failure five hours after insertion. I rarely get insulin blockages with angled sets. This site failure reminded me why I had quit using Quick Sets ten years ago and learned to live with the horrible insertion needles of angled sets. I’ll use the box of Cleo’s and probably go back to Comfort Shorts. I can stand a little pain and inflammation to have reliable insulin delivery.

After covering a lot of subjects here without much sense of direction, I’ll wrap up by saying that I’m back to blogging after a brief hiatus. Judging from the last two days, I think my diabetes care is back on track. In many ways these two things go hand-in-hand because they are reflections of how much diabetes is like a spoiled child who demands all of our attention and won’t settle for less than 100%. Not even when you want a vacation….

Baby Steps

Sue B_Head SquareFor months I have been blogging about the roadblocks my husband has faced in getting a CGMS. He used one before going on Medicare, but a replacement system prescribed by his endocrinologist was denied by Medicare. We went through Levels 1, 2, and 3 of the Appeals process and had a hearing with an Administrative Law Judge on June 26, 2013. After being promised a decision in three months, we are  at seven months and still waiting for the judgement to be drafted so that we can find out if we got a “Fully Favorable Decision” or not.

In the meantime, I have been in contact with a Legislative Assistant of Representative Carol Shea-Porter [D-NH1].  In December 2013 Shea-Porter introduced a bill into Congress (H.R. 3710) which provides for coverage of Continuous Glucose Monitoring Systems by Medicare if recommended by a doctor. Unfortunately this bill is being given little chance of passing, but I believe it is an important step in bringing attention to the important issue of CGMS coverage for senior citizens.

I have also been in touch with the Global Marketing Director of Dexcom and she has indicated that together with Medtronic, they are forming a coalition to plan a big legislative push with respect to CGMS and Medicare.

I have been cautioned that it is too early to become excited about a speedy change in Medicare policy. But for me this is exciting news. I have gone from feeling totally alone in my crusade to knowing that a Congresswoman, Dexcom, and Medtronic are taking steps to influence Medicare to change the guideline.  For the many diabetics on Medicare who need a CGMS and can’t afford the cost of the device and sensors (my husband being one of them), there is a glimmer of hope that victory will be achieved now that some of the big-time players are becoming involved in the fight.

Climb the MountainThe steps being taken now are just baby steps and it is still a long way to the top of the mountain. There will come a time when I, together with many others, will need to have our voices heard. We will need a groundswell of support from the Diabetes Online Community to help change Medicare policy to provide for CGMS when medically necessary for senior citizens with diabetes.

Right now we are in the early stages of figuring out how to do this in the most effective way. I urge you to keep reading Test Guess and Go as we update our progress.  Please contact me if you have any information or contacts who will be helpful in pursuing this goal. If you are on Medicare (or will soon be on Medicare) and are concerned about your safety in living with diabetes without a CGMS, please reach out to me to add your name to my growing list of advocates.

Baby steps.  So small, but the first steps on the road to victory.

Oh What a Night!

Sue May 2013_Head SquareNo, I’m not referring to the popular song by The Four Seasons. I’m referring to last night.

After dinner I checked my blood sugar, got a reading of 246, and dosed 5 units of Apidra on my pump, which is what I normally dose for a 250 reading. I went to bed around 9, and woke up to four loud beeps and a reading of 50 on my Dexcom around 12:30 am. I ate two glucose tablets and went back to sleep. Around 1:15 am my Dexcom beeped four times again, and after doing a finger stick and getting a reading of 54, I once again ate two glucose tablets and a small box of raisins and went back to sleep. Another hour passed, another four beeps, and this time the Dexcom read 40. What on earth was going on? This time I drank a small box of juice, and once again returned to sleep. After another hour I got the four beeps again. I got up and swallowed a tablespoon of maple syrup, the old standby my husband always used when I was comatose from a low. When I woke at 7:30 this morning, my fingerstick showed a reading of 83. So overnight I consumed approximately 55g of carbs, and still only woke with a blood sugar of 83!

BG Numbers off a Cliff

Now before I got the Dexcom, I wouldn’t have been awakened four times in one night. My husband would have been awakened by me convulsing. He would have then proceeded to force feed me tablespoons of maple syrup and then wait patiently for me to wake up. This used to happen to me several times a year. It has only happened once in the four years that I’ve been using the Dexcom.

At the present time, Medicare doesn’t approve the use of a continuous glucose monitor. I will be on Medicare in a year and a half. At that time, I anticipate that like Sue from Pennsylvania’s husband, my Dexcom will be a thing of the past. Sue’s husband had a telephone hearing last summer with the Medicare administrative law judge, and he is still awaiting the decision.

As Sue stated in her December 26th post titled The Crusade Continues, there is a bill being introduced to Congress, H.R. 3710: Medicare CGM Coverage Act – to amend title XVIII of the Social Security Act to provide for coverage of continuous glucose monitoring systems (CGMS) as durable medical equipment under Medicare, and for other purposes. In my opinion, after young children, seniors are the ones who most need CGMs. I pray that this bill gets signed into law, and this age discrimination by our government becomes a thing of the past.

My Insurance Appeal for Dexcom Coverage

Sue May 2013_Head SquareIn January 2010 I started using the Dexcom Seven Plus Continuous Glucose Monitor (CGM).  I had wanted to go on the FreeStyle Navigator CGM System because of its reputation for accuracy, but I went to the Syracuse Joslin Center to meet with the certified diabetes educator, she advised me to go on the Dexcom Seven Plus instead.  I reluctantly agreed.  Of course it turned out to be the right decision because not long after that Abbott stopped selling the Navigator in the U.S.

Anyone who uses the Dexcom knows what a life changer it is with controlling blood sugars.  I used to have at least two severe overnight hypoglycemic episodes every month.  I’ve only had one since going on the Dexcom.  Yes, there are nights when my husband and I are woken repeatedly by Dexcom alerts for high or low blood sugar. However, that is a small price to pay to avoid waking up wet with sweat and seeing my husband sitting next to me with a concerned look on his face.  What he went through to bring me to back to consciousness was much worse.  I know that experience because our son also has Type 1 diabetes and I have been on the caregiver side of severe hypoglycemia.

A year after going on the Seven Plus, my personal diabetes manager (PDM) that controls the sensor went out of warranty.  In February 2011 Dexcom sent me a new one.  I had changed from one Blue Cross insurance plan to another during the year, and although my new company had been paying for the sensors, they sent me a letter of denial stating the following:

“According to Corporate Medical Policy and peer-reviewed literature, continuous glucose monitoring systems are medically appropriate for patients who are currently using an external insulin pump and, for patients over 18 years of age, diabetes is poorly controlled as evidenced by unexplained severe hypoglycemic episodes defined as an episode of low blood sugar resulting in a profound degree of cognitive dysfunction (e.g., stupor, seizure or unconsciousness) which requires external assistance for recovery.  The medical records submitted by Dexcom do not indicate any of the above conditions.  Therefore, these services are not medically necessary and are ineligible for coverage for DOS 2/15/11.”

I immediately called the insurance company and was told that I could appeal the decision.  I composed a letter of appeal stating that both Dexcom and I had called to get authorization before the replacement PDM was shipped.  Dexcom had sent them records of my blood sugars and my endocrinologist’s letter of medical necessity.  When I had called, I was told that no pre-authorization was needed, just the letter of medical necessity.  So we both thought we were good to go. In the letter, I detailed numerous episodes of severe hypoglycemia, one resulting in cuts after falling into a glass table (luckily it was safety glass), and sometimes needing assistance from medics or transport to the emergency room.  I provided them with a copy of the bill from the hospital, as well as printed reports showing numerous blood sugar readings below 50 from my Dexcom and OmniPod pump.  In my final paragraph, I stated:

“In consideration of the fact that I am using an external insulin pump, over 18 years of age, and I have poorly controlled diabetes as evidenced by unexplained severe hypoglycemic episodes resulting in a profound degree of cognitive dysfunction, I believe that the CGM provided by Dexcom is in fact medically necessary for the effective management of my blood sugars.  In the event that I were to discontinue use of the Dexcom, I believe that I would resume having severe hypoglycemia episodes that would require outside assistance, i.e. a 911 call for assistance and/or emergency room hospitalization, and have higher A1C’s and increased variability in my blood sugar ranges.”

In June they reversed their decision and paid Dexcom.

Dex Insurance Appeal

I have since transitioned to the Dexcom G4 Platinum CGM and now enjoy increased accuracy and ease of use.

In two years I will be of Medicare age and I know that all the rules regarding continuous glucose monitors will be different.  I am thankful for people like Sue from  Pennsylvania who is assisting her Type 1 husband in appealing Medicare’s denial of payment with an administrative law judge.  I pray that they and others will pave the way for Medicare to change their policy of nonpayment for CGM systems so that Type 1’s can continue to stay safe in their retirement years.

It’s Not as Hard

Laddie_Head SquareI am at a stage in life where caring for my Type 1 Diabetes is easier than it has been for most of my life.  I initially titled this post as “It Gets Easier”.  I decided that to use the word “easy” anywhere on the same page as diabetes was a total travesty.  Diabetes of any type at any time is always hard.  Hard as rocks.  Hard as nails.  Hard as anything you can think of.  But right now for me it’s not as hard as it used to be.

Partial hypo-unawareness makes it easier for me not to over-correct.  No more sitting at the kitchen table in the middle of the night eating bowl after bowl of Frosted Flakes in a soaking wet nightgown.  No more drinking an appropriate glass of orange juice followed by just one Wheat Thin that turns into half a box.  Most of my nighttime lows are taken care of by one or two glucose tabs eaten from the stash on my bedside table.  (Note to self:  don’t tell your readers how often you silence Dex alarms to roll over and go back to sleep.)

I am currently retired from my part-time job and I am able to walk my dog every morning right after breakfast.  Through most of my years with diabetes, breakfast has been my most problematic meal.  The same meal could have post-prandial readings that varied by a hundred or more points from day to day.  By walking immediately after eating, I usually prevent the extreme spikes that require large doses of insulin to bring me back to an in-range reading.  Although I occasionally have an outrageous high with no discernible reason, most of my mornings are somewhat level and predictable now.

I am lucky to be able to escape Minnesota winters and spend several months in Arizona.  This means that my exercise level can be consistent throughout the year rather than taking a nosedive in the endless dark, cold, and ice of winter in the Upper Midwest.  I am a true believer that exercise is the key to a successful life with diabetes and consistency in exercise helps for stable basal rates.

My newest continuous glucose monitor, the Dexcom G4 Platinum, has improved my physical and mental health in almost immeasurable amounts.  This is my 3rd CGM system (after the Medtronic CGM and the Dexcom 7+), but it is the first one that has been life-changing.  Occasionally it will cry wolf for non-existent lows, but in general it is incredibly accurate and alerts me to lows before I reach the 50’s and 40’s.  I can go about my day with the confidence that it will alert me when I’m out of range and it lets me forget diabetes sometimes.

At age 61, I’m past those pesky hormones that can wreak havoc with BG levels throughout the month.  There are some definite downsides to having fewer hormones, but blood sugar control is not one of them.

I eat fewer carbs than I used to and average about 100 grams per day.  In the old days, that was considered Low Carb.  Because there are so many people who go much lower than that these days, I think I’m now on the low end of Moderate Carb. I believe that each one of us has to make our own choices when it comes to our diet, but I have never been able to match insulin to high carb meals and snacks.  By reducing the post-meal peaks, I’ve gotten rid of many of the lows that result from preventing or treating those highs.

Diabete a MeterI think the reason I’m feeling good these days is that my hard work seems to be having good results.  We’ve all had spells where we do the “right” things and diabetes just laughs at us.  But right now it’s smiling.  How long will it last?  Probably not long.

So do I have Type 1 Diabetes figured out?  Nope. I still love sweets and struggle with evening carbfests that lead to bad overnight highs and lows.  I still have highs that make no sense at all.  When I go high, I can’t seem to take enough insulin to bring my BG back to normal.  I have daily lows in the 60’s and 70’s.  I am fighting my third frozen shoulder despite having good A1c’s.  I have to take diabetes into account for almost every activity in my life.

But most of the time, I’m doing okay.  And that’s a win in my book.

Pin the Tail on the Donkey: Buying a New Pump

This post is my June entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/june-dsma-blog-carnival-3/ The topic is: How do you select the diabetes devices you use? To others looking into new or replacement devices, what would be your best advice to someone shopping around?

Laddie_Head SquareWhen I select medical devices, I put on a blindfold, turn around 3 times, and pin the tail on the donkey.  Oops, wrong game.  But that is what it felt like when I bought my last pump in December 2012.

When I began my pump search, I was using an out-of-warranty Medtronic Revel pump and a Dexcom CGM (continuous glucose monitor).  I had previously used the Medtronic CGM and found it to be painful and inaccurate.  But I loved having a sensor augmented pump and only having to carry one device.  So a pump/CGM combo was my #1 criteria for my next pump.  Unfortunately there was no device on the market that had the features I desired given that I was unwilling to use the Medtronic CGM.

Medical device companies are prohibited from giving detailed information about pumps in development and they have no control over how long FDA approval will take.  So ultimately I had to make my purchase decision based on my best guess of which future pump would have the features I wanted along with a guess of how soon it would get to market.  So I put on my blindfold and went to work.

Pin the TailI was very happy with my Medtronic pump and I knew that their improved Enlite sensor system would “soon” be available in the USA.  Animas was on track to release a pump that would be combined with the newest Dexcom G4 Platinum CGM.  The new kid on the block, the Tandem t:slim, was a touchscreen rechargeable pump that would also eventually link up with Dexcom.  I didn’t have any reason to consider the Accu-Chek pump, so I ignored it in my decision.  I don’t mind tubes and was not interested in the Omnipod.

Normally I would love to make a chart and compare features pump by pump.  But I didn’t have sufficient information to do that with my most important decision points. I had no way to evaluate the Medtronic Enlite sensor system, and I wasn’t willing to leave Dexcom to take a chance on it.  I found the Tandem pump intriguing, but they had no upgrade program in place and I wasn’t willing to risk not having an affordable pathway to buy their future sensor integrated pump.  I chose Animas because it will be the first pump released with an integrated Dexcom CGM and I am guaranteed a $99 upgrade fee to get that pump.

Am I happy with my Animas Ping pump?  Not really.  I knew that I would hate the menu system, but I actually underestimated how much I dislike it.  But it’s a good pump and it does the job of delivering my insulin safely.  Do I regret my decision?  No, because I made the decision based on the future which has not arrived yet.  I am still waiting for the Animas Vibe to come to market and I think that it will fix the things I don’t like about the Ping.  It will definitely give me the pump/Dexcom combo that was and is my #1 requirement.

My advice to others who are shopping for their first pump or a new pump?

Do your homework:

  • With yourself.  Decide which features are most important to you.  Do you want tubeless?  Do you require a large reservoir?  Do you want a Pump/CGM combo?  In most cases you won’t get everything on your wish list, so be open to considering several brands of pumps.
  • With the pump companies.  Visit their websites and request their brochures.  If a local rep is available, meet with him/her to see the pump and learn more about it.  Omnipod even has a non-operational sample pod that allows you to try it out on your body.
  • With your medical team.  If this is your first pump, your medical team may require classes about pumping and carb counting before prescribing a pump.  I think it’s valuable to ask for your team’s opinions on pumps, although ultimately you should get what you want not what your doctor likes.  Your doctor’s office might also have demo pumps and infusion set samples.
  • With your insurance company.  Many insurance companies will cover all pump brands.  But if they don’t, it’s good to know that up front.  For example, Medicare will not pay for the Omnipod at this time.  Also, it’s a good idea to determine your financial responsibility for the pump purchase and the ongoing supply expense.
  • With other pumpers and the online community.  Message boards and blogs are a wonderful source of information and opinions on pumps.  Fortunately most people end up happy with the pump that they choose, but it’s still helpful to learn as much as you can about the pros and cons of each brand.

It has been six months since I purchased my pump.  The questions I would have liked answered then are still unanswered.  The Animas/Dexcom pump has been submitted to the FDA, so there has been progress.  I have some regret that I did not go with the t:slim, but for the most part I think I made the right decision.  And if you think about it, it’s only 3-1/2 years until I go shopping for my next pump!