The Grouch is Back!

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.

A Chance to be Heard

Laddie_Head SquareOver the weekend I was asked by fellow Minnesotan Scott Johnson to write a statement about the value of continuous glucose monitors (CGM) for senior citizens, most specifically as it relates to  Medicare and CGM coverage. Rather than recreate the wheel for why he asked me, here is an excerpt from Scott’s email:

Scott Email Paulsen

Erik Paulsen (R-MN3) represents the Third District of Minnesota. He is a champion of fiscal responsibility and technical innovation when it comes to healthcare. Paulsen is a member of the diabetes caucus in the U.S. House of Representatives and is a supporter of “bipartisan, common sense solutions” for our healthcare crisis. Although Scott did not know this, I live in Erik Paulsen’s district and have previously contacted him by letter, email, and Twitter regarding diabetes issues such as federal funding for diabetes research and the need for Medicare coverage for CGMS. (I also voted for him in the recent November election.)

Luckily for Scott, I had an unfinished blogpost about growing old with Type 1 diabetes and it didn’t take long to draft a statement to be shared at the JDRF advocacy meet-up with Congressman Paulsen. This is my statement as submitted to Scott and shared with The Honorable Erik Paulsen, United States House of Representatives:

Paulsen Statement by Me

Thank you to Scott for sharing this photo from Monday, November 17, 2014. Left to right: Camille Nash, Debbie Evans, Scott Johnson, Rep. Erik Paulsen, Chelsea Grimes.  Camille, Debbie, and Chelsia are mothers of children with Type 1 diabetes and along with Scott, represented the MinnDakotas Chapter of JDRF to advocate for Medicare coverage of Continuous Glucose Monitoring.

2014-11-17 10.51.00

 

          Oh yes, I am awesome, Scott. And so are you!

Postscript:  The day after this meeting, Representative Erik Paulsen signed on as a Co-Sponsor of H.R. 5644: Medicare CGM Access Act of 2014.  Talk about concrete proof that our advocacy efforts can make a difference!  Thank you to Camille, Debbie, Scott, and Chelsea for representing JDRF and sharing your stories and my story with Rep. Paulsen.  And thank-you to Erik Paulsen for going on record as supporting Medicare coverage for CGMS.

The Grouch Addresses D-Tech

Laddie_Head SquareI am a tech-happy Type 1 diabetic. A new diabetes device gets my heart racing and I treasure my D-devices almost as much as my iPhone and iPad. Maybe more? Nah…. Until there is an iPump, I will love my iPhone and iPad more. But my life is immeasurably better because of my insulin pump, continuous glucose monitor, and even blood glucose meters.

I have come to terms with riffraff hanging off my body and filling up my pockets. I don’t mind the daily minutiae of using these devices and I take things like changing infusion sets and poking my fingers in stride. I’m old enough that I don’t wear cute dresses any more and don’t have to worry about accessing a pump tucked in my underwear. I don’t care about black dots on my fingers and the red spots and occasional bruises that tattoo my body. I am not burdened by my diabetes devices.

At the same time I am very frustrated with my D-devices.

I have been using an Animas Ping since 2012 and am still irked by its menu system. Two years ago I made the decision to purchase this pump despite its shortcomings because I thought the release of the combo Ping/Dexcom device was just around the corner. My Bad. It’s now November 2014 and the rumor these days is that the Vibe release is just around the corner….

Some of my frustration for this delay is directed at Johnson & Johnson which didn’t submit the pump to the FDA until April, 2013 after several years of hinting that the submission would be in the near future. The Vibe was released in Europe in June, 2011 and I sit here 3-1/2 years later hoping to upgrade to one. The fact of the matter is that when the Vibe is finally released in the USA, it will be a 4-year-old pump. In some ways it will be little different than the Animas Ping as it was approved by the FDA on July 1, 2008.  So you could argue that Grouch D-Techthe Vibe is really a 6-1/2 year old pump. My understanding is that the G4 software update just released by Dexcom will not be included in the Vibe. Therefore the Vibe will be an old pump integrated with an out-of-date Dexcom receiver.

In general I am incredibly frustrated with the whole FDA process. I don’t understand why it takes a couple of years to review something that has been in use in Europe for several years. I don’t understand why if Dexcom has been given FDA approval for its latest update that neither Animas or Tandem will be able to include that update in their pumps that integrate with the Dex G4. In my opinion the lengthy FDA approval process punishes innovation and motivates manufacturers to stay with old devices superficially decorated with trivial new bells and whistles. Many or most diabetes tech devices are developed by US companies and we see the overseas market getting access to them years before we do. It’s cheaper and faster for manufacturers to get approval in Europe.

Are users of diabetes tech safer in the USA than in Europe? I’ve never seen proof of that.

The iPhone 4 was released in April, 2011. Some of you might be using it happily: unless you want to use IOS 8 / unless you have a new iPad which can’t use iCloud optimally unless all of your devices are using IOS 8 / unless you don’t mind your phone freezing up on multiple websites and apps / unless you want a beautiful, new sleek device. What if you had to purchase an iPhone 4 today and pay the same price as an iPhone 6?  Yeah, that’s the same excitement (not!) that I feel about the Vibe when and if it is ever released.

Yes, the FDA is trying to keep me safe. Please don’t tell them that the most dangerous thing I can do is go back to injections and accidentally substitute my fast-acting Novolog for my Lantus shot. Or carelessly give my basal insulin twice because I couldn’t remember if I had already given the injection. Insulin is a dangerous drug and everyone with Type 1 diabetes knows that we occasionally play Russian Roulette with our lives.

I recently read Cell by Robin Cook where a smartphone app called iDoc became an integral part of the medical care for test subjects. People with diabetes were implanted with an internal insulin pump that was controlled by iDoc.  iDoc was a master of blood glucose control until the patient got another medical condition (cancer, heart disease, etc.) that threatened to make their health care costs skyrocket. At that point, iDoc programmed a lethal dose of insulin for the diabetic patient. Dead as a door nail. Maybe I would like some FDA oversight on iDoc….

Continuing my frustrations with D-Tech, last Thursday I read reports of the new software release for the G4 by Dexcom. I quickly tried to update, but the Dexcom website was having problems. Kind of like the FDA crash on Monday, Nov. 3 at the #DOCasksFDA event. Don’t these people know that the DOC doesn’t fool around when it comes to sharing information? We arrive quickly and in large numbers and don’t fool around. There is no such thing as a trickle down release of information in the DOC.

Fortunately the Dexcom website was back working in an hour or two and I successfully updated my Dexcom receiver. Because my current sensor was almost two weeks old, I started a new sensor to inaugurate the new software. It ended up being the worst sensor start that I have ever had in my two years of using the G4. Within a few hours, I had Dex results that were a hundred points too high. A recalibration resulted in Dex results that were 80 points too low. Two days later the results were still not in line. Argh!

I hate D-Tech.

My Dexcom debacle has a happy ending (I hope!) and several of my last sensors are being replaced. I had been having problems before the update and I think the rotten sensor start was just an unhappy coincidence. I have had superb customer service from Dexcom in the last couple of days. The jury is still out on whether my problems have been sensor related or equipment related, but I am hopeful that I am back on the right track.

Totally unrelated to my rants in this post, my pump case cracked yesterday when I inserted a new battery. I called Animas and only had to wait 2-3 minutes before talking with a Pump Rep. A new Ping will arrive on my doorstep tomorrow.

Okay, maybe I love D-Tech.

 

Yellow Dot Program

Sue B_Head SquareWhat happens if a traffic accident leaves you unable to speak? For that matter, what happens if you are a diabetic with hypoglycemia unawareness and suffer a severe low while operating a motor vehicle? I can go even further and ask what happens if you have a heart condition and suffer an incident while driving your automobile? There are many what ifs. I recently found out about a program called the Yellow Dot Program. I learned of this program when my fellow blogger Sue and her husband Steve were visiting us from New York during the summer. Somehow we got into a diabetes discussion, and the subject of this program came up because they had a Yellow Dot on the driver’s rear windshield of their car and the Yellow Dot booklet in their glove compartment. I googled my Pennsylvania State Department of Motor Vehicles and found out that Pennsylvania had the program and immediately sent away for the booklet which contains the Yellow Dot and information about using the booklet to inform police and first responders in the case of an accident.

So, what is exactly is the Yellow Dot Program? This program was created to assist citizens in the “golden hour” of emergency care following a traffic accident when they may not be able to communicate their needs themselves. Placing a yellow dot on your Yellow Dot Examplevehicle’s rear windshield alerts police and first responders to check your glove compartment for vital information to ensure you receive the medical attention you need. While it was specifically created for traffic accidents, I have been told by my Department of Motor Vehicles that they are now adapting it to include any type of medical issue including diabetes. That wonderful yellow dot on the rear driver’s window of your vehicle will alert the police or first responders that you are not drunk…you are having a diabetes-related incident.

I sent away for the pamphlet immediately and received it within 10 days. If you have read my blogs on this site, you will know that I write extensively about my worry for my husband, Marc, when he is not with me. His hypoglycemia unawareness has caused many frightening moments in our lives and my constant worry was always that he would be in the car and be stopped by the police and they wouldn’t realize that he was having a diabetic incident. This simple Yellow Dot gives me some peace of mind.

It’s very simple to start using the Yellow Dot Program. All you need to do is contact your Department of Motor Vehicles and request the Yellow Dot Kit. When you receive it, fill out the information booklet, put the yellow dot on the bottom of the rear driver’s side window and the information booklet in your glove compartment. The information booklet has a place to put your photo, all your medical information including medical conditions, emergency contacts, medications, allergies and physician information. You can also indicate your hospital preference. When the police or first responders see the Yellow Dot on your car they know to look in your glove compartment immediately. It couldn’t get any easier.

According to Peter Kissinger, president and CEO of AAA Foundation for Traffic Safety, “older individuals tend to have more medical conditions, are on more medications and are generally more fragile. This well-justified program, especially in light of the growing number of older Americans, is innovative and addresses the unique risks associated with older Americans”. While he specifically targets older Americans, it gives anyone, whether young or old, with specific medical conditions, the ability to telegraph to police or first responders that there is information in the glove compartment that will help in the event of an accident or other incident. This information is invaluable.

The Pennsylvania Department of Transportation supplies the Yellow Dot and Booklet at no charge. On some websites, I have seen places that do charge for the materials. And I also saw that every state has a Yellow Dot Program. In asking around, I found out that with the exception of Sue from New York and her husband Steve, no one else knew about this program and I truly believe it’s vital that the information be passed around. Because of this lack of knowledge of the program, I called my Department of Transportation and found out that they actually have a special department for the Yellow Dot Program and are aware that they need to do a better job getting information out to their various police departments, first responders and fire departments in my State of Pennsylvania and also to all the citizens of the State. They are having meetings with these groups in order to promote awareness.

I hope that after reading this blog, you the reader will contact your local Department of
Transportation and request your kit and also find out how much they are doing to promote this very, very important program. It can definitely save your life.

DSMA Blog Carnival: Get the Diagnosis!

Type 1, Type 2, LADA, Gestational, diabetes brought on by surgery . . . . the list of types of diabetes goes on.  Each type may have differences, but ultimately they are all diabetes.  When we think about it, there is a whole lot that all types have in common.  However, that doesn’t mean we can’t give credit for some differences too.  So lets look back to our “Breaking down the barriers between types” chat on September 10th and discuss . . . . .Anything easy about living with your type of diabetes that isnt easy for another type?

Laddie_Head SquareNothing like pushing the deadline for the October Blog Carnival by waiting until today to write my post. I could muddle on forever talking about the differences between the types of diabetes, so I have selected one area in which Type 1’s often have an easier time than people with Type 2.

And that area is Insurance. In general Type 1’s have an easier time than Type 2’s getting test strips and devices like pumps. Medicare’s standard allowance for test strips is crappy for everyone, but non-insulin users are only allotted one test strip a day. Insulin users (and that includes some Type 2’s) get 3 times as many with 3 per day. Still inadequate, but with documentation and proof of medical necessity from a doctor, overrides are available.

Pumps are easier for people with Type 2 to get than in the past, but there are definitely a lot of hoops to jump through to get coverage.  A diagnosis of Type 1 diabetes is often sufficient for automatic pump coverage under many insurance plans. My first pump was approved by insurance in less than 24 hours. When I get to Medicare in 2.5 years, I will be required to have a c-peptide test to prove that I don’t produce insulin. I have been worried about that test but when I asked my endo if I should be concerned, she just laughed.

Continuous glucose monitors are almost impossible for Type 2’s to get insurance coverage for. Under my current insurance, the first mandate for CGM coverage is “Type 1 Diabetes.”

Often I read forum posts by adults who have been diagnosed as having Type 2 diabetes because of their age when they clearly have characteristics of Type 1 or the newer diagnosis of LADA.  Occasionally someone will reply to them that it doesn’t matter what type they have as long as they are being treated properly. I disagree with my statement. I know that I have always had good insurance and I am not a Medicare or insurance expert, but if you are Type 1, you want to be diagnosed as Type 1 not Type 2.  Although many doctors are starting to use the LADA diagnosis, there are currently no Medicare or insurance codes for that. So for insurance reasons, if you are LADA, you are Type 1. Get the diagnosis so you can get the care and devices that you need.

Get the DiagnosisDo people with Type 1 diabetes have better insurance coverage because our type of diabetes is worse?  Well, maybe yes. All types of diabetes are the “bad” kind, but Type 1 is flashier bad. We wear the costume of “cute little kid” even though we can be anything from an infant to an 80- year-old crotchety old guy. We pass out at inopportune times and occasionally scare the crap out of everyone with seizures. Our BG numbers can range from 30-450 in a single day and we don’t consider a jump from 100 to 110 in fasting BG to be significant. Without insulin we could die in a couple of days or weeks. In general Type 1 is more dangerous in the short run and yes, we need pumps and CGM’s more than most people with Type 2.

But Type 2 is a subversive and sneaky kind of diabetes. You may not get access to the fancy devices, but if you ignore your diabetes, you can get the nasty complications. Insurance will pay to treat your complications even if it won’t help you prevent them. So don’t ignore your diabetes. You have the bad kind too!

This post is my October entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at:  http://diabetescaf.org/2014/10/october-dsma-blog-carnival-4/

A Thank-you Note to Laura C.

Laddie_Head SquareDear Laura,

We’ve never met in person or crossed paths in the diabetes online community (DOC). I was diagnosed with Type 1 diabetes in 1976 at the age of 24. When my children were born 30+ years ago, I naively never worried about them getting Type 1. When I became involved in the DOC over 10 years ago, I quickly became a supporter of parents of children with Type 1. At the same time I gave thanks every day that I had diabetes instead of my children. Most of the parents whom I’ve met in the DOC would happily live with Type 1 if they could take the burden away from their children. I suspect that you feel the same way.

I recently listened to you and your husband talk on the Oct. 20 DSMA ‘Rents podcast about CGM in the Cloud. I have read many blogposts and listened to multiple interviews about the Nightscout system and am amazed by the #wearenotwaiting project. The technological support and peace of mind it provides for people with diabetes and their parents/families is wonderful. Although some adults with diabetes are using the system, I personally don’t need it at this time. As a diabetes tech junkie, I’ve been tempted to buy the gear and set it up, but so far I’ve resisted.

But Nightscout is not what this letter is about.

I am 62 years old and will be on Medicare in 2.5 years. I have used continuous glucose monitoring (CGM) for over five years and have found the Dexcom G4 to be a life-changing device for me. I am safer, my blood sugars are more tightly controlled, and I feel better both physically and mentally. When I reach Medicare age, I will have used a CGM for almost 8 years with full insurance coverage. I am terrified of the day that current Medicare policy will deny me that coverage. I am befuddled by decision makers who label CGM as “precautionary and without proven value” while this still-improving technology has a proven track record, can save money by reducing hypoglycemia-related ER visits/hospitalizations for seniors, and is a fundamental technology of the Bionic Pancreas.

Today I write to thank you for your closing remarks on DSMA ‘Rents:

“And the other thing I’ll add real quick as the Advocacy Team Chair for our Rochester Chapter of JDRF-  None of this would be possible without the CGM technology and there’s a bill currently going through Congress right now to allow seniors on Medicare access to CGM. Most, I think it’s like 95% of private insurance, covers CGM’s whereas our seniors don’t have access to them. And I feel like just because our son [name withheld] is 6 and not 66 doesn’t mean he is any more or less deserving of this technology. So all these great things that we have because we have access to it, I think our seniors deserve as well. So I’ll just put that pitch in there.”   (Loc. 55:07)

In the last year and a half, the issue of Medicare CGM coverage has moved to the front page Dear Laura Cof DOC advocacy. (One of the leading champions of this issue is my co-blogger Sue from Pennsylvania.) Those of us with insulin-dependent diabetes on Medicare or approaching age 65 have appreciated the support of parents, families, friends, medical professionals, and people with all types of diabetes. With the whole diabetes community supporting us, we have had and will continue to have a louder voice than we would otherwise.

But the fact that you took the time to conclude your interview concerning your project and your son with the importance of my issue is incredibly heart-warming.

So I thank you, Laura. If I ever had doubts that those of us affected by diabetes can be a united and supportive community, your eloquent remarks smashed them. I will sleep better knowing that you are on my team.

Sincerely yours,

Laddie Lindahl

Test Guess and Go

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.