Sunlight and the Dex G4: A Bad Mix

Laddie_Head SquareI’ll start this post by saying that I am very happy with my Dexcom G4.  It is by far the most accurate of the CGMs that I have used, the previous two being the Medtronic Sof-Sensor and the Dexcom 7+.

But I think that it has one serious problem and I am surprised at how little I have seen written about it.

The G4 has a beautiful color screen and uses yellow for highs, white for in-range readings, and red for lows.  When I hike in Arizona and am in bright sunlight with little or no access to shade, I cannot read anything on my Dexcom that is in red.  I can see the white numbers the best and can vaguely see the yellow numbers.  But even when I put my receiver in the skimpy shade of a desert bush and use my hand to shield the receiver as much as I can, I cannot see the red numbers or read the red low alert screen.  My glasses have transition lenses which turn dark in the sun, but I think that it is a reasonable expectation that people spending time outside will be wearing sunglasses.

So when I am hiking with my G4, how do I know that I am low?  I can see the white numbers fairly well and the yellow numbers a little less well.  So if I can’t see the number at all, then I must be low!  I don’t think that is exactly how the CGM is supposed to work…

Dex and SunWhen my Dex alerts me to a low, I know I need to test and take action.  My alert threshold is set at 70.  Does the current alert mean my BG is 69 and a glucose tab or two will take care of the problem?  Or is it 49 and I’m in danger of falling off a cliff?  I can’t answer that question because I can’t read the number.  When I’ve been in bright light for a long time, it is also difficult to see the directional arrows to know if my BG is dropping, stable, or rising.

I’m sure the idea of using red for lows was thought to be a good one because red is often associated with danger and emergencies.  Unfortunately testing of the screen readability must have taken place in a lab not out in harsh sunny conditions.  I wrote a long email to Dexcom about this problem and never received a response.  I will call them soon just to get the problem on record.  I can see things on my iPhone screen in the sun, including red text, so a fix of this issue is not an insurmountable problem.  An easier fix might be to stop using red for any of the vital information.

There is a December 2012 thread in the TuDiabetes Dexcom Users group about this issue and I bumped it up on Monday to see if others ran into the problem this summer and there are a few new responses.  The original author of the thread was a cyclist who couldn’t see her G4 numbers and arrows without getting off the bike and moving into the shade.  As she said, this wasn’t a good option for races.

Is anyone else having this problem?  Any suggestions or solutions?

Part 2: The Times They Are A-Changin’

Laddie_Head SquareThe first part of this series focused on change coming as a result of the Affordable Care Act.  This post will discuss one change that has already occurred in my healthcare universe and how I expect it to impact my care.

Late in 2012 I received a notice from my internal medicine clinic that they were switching to a cash-only model starting on April 15, 2013.  The primary reason for the change was stated:  “The present insurance environment reimburses independent clinics less than large, corporate practices.  To continue to provide the high quality care that you have come to expect at our office, we need to change our business model.”

Initially I panicked because I thought I was going to be forced to leave a doctor whom I like and respect.  Doing my homework I learned that my insurance will cover visits to this clinic, but it will be as an out-of-network benefit and I will have to file the claims myself.  The out-of-network provision means that any difference between the billed amount and the charges allowed by my insurance company will be my responsibility.

There are actually 3 options for continuing my relationship with this practice.  The first is a straight fee-for-service plan where office visits are billed based on time and lab/procedure fees are reasonable because they lack the high mark-ups traditionally billed to insurance companies.

The second option is a fee-for-service plan with a $300 annual fee for “Enhanced Primary Care.”  This plan provides access to my doctor through phone, email, texts and online care.

Cash Only DoctorThe third option is a Comprehensive Care plan where everything including office/hospital visits, labs, EKGs, phone consults and emails is covered for a fee of $2500.  This option is basically concierge medicine as shown on the TV show Royal Pains (USA Network) minus the mansions, sports cars, helicopters, and obnoxious brother.

After some thought, I decided that my initial panic was unfounded and that I should not make any changes for the foreseeable future.  One reason is that my current insurance through the high-risk pool in Minnesota will disappear in 2014 when insurance companies can no longer refuse me coverage because of Type 1 diabetes.  It seemed silly to find a new internist in 2013 and risk having to change again in 2014.

A second reason is that in recent years I have only seen my internist once a year for a physical.  Despite being the queen of autoimmune chronic conditions for which I see specialists, I’m pretty healthy otherwise.  I figure that if I have no significant changes in my health status, there is no major financial risk to staying with this practice.  As I choose insurance in the coming years, I will need to be sure that I have coverage for out-of-network physicians even if it is with a higher co-pay than in-network doctors.

A third reason is that I will be on Medicare in less than four years.  Although this clinic will be cash-only for regular insurance, it will continue to accept Medicare.  There is a caveat with this acceptance.  In order to stay in the practice with Medicare, you are required to pay the annual Enhanced Primary Care fee of $300.  I am okay with this fee and understand the necessity for it.  Medicare reimbursement is often ridiculously low or nonexistent for many services.  I realize that my doctors and their staff need to make a living wage in order for the practice to thrive.  Also the telephone consults and online benefits included in that fee will be beneficial.

I have an appointment for my annual physical in three weeks and this will be my first visit under the new cash-only model.  I have selected the fee-for-service option because currently I don’t need the benefits of the Enhanced Primary Care or Comprehensive Care models.

Although I was initially frightened by these changes, I am starting to be more comfortable with the idea of a different financial relationship with my internist.  In many ways I think that this change may end up ensuring that I have better medical care in the coming years.

Each of the five physicians in the practice has a personal statement on their website explaining his view of the transition to a fee-for-service model and his future in medicine.  My doctor ended his statement with the following words:

“The decision to no longer accept insurance is the change we needed to make. It was a very difficult one….  I hope that our sensible pricing system reflecting the service and follow-up provided will be understood as necessary to keep our practice viable. I believe that the new care opportunities for visits and consults, telephone and email, will result in better services and allow us to continue to provide the type of care our patients expect and deserve for many years to come.

 I always knew I wanted to be a doctor. I still do. With the patient as my primary focus. Practicing medicine the way it was meant to be practiced.”

Those of the words of a physician that I am pleased to call “my doctor” and I hope that his decision to take the insurance company out of the equation will be a good decision for both of us.

Part 1: The Times They Are A-Changin’

Laddie_Head SquareWhen Bob Dylan wrote this song, I think that he was writing about civil rights, history, and the idea that change is coming whether you want it or not.  Sounds a lot like the Affordable Care Act.  Some of the provisions in this bill have already been enacted and we’ve seen increased coverage for preventative care and the ability for young adults to stay covered under their parents’ insurance until age 26.  But there are still big changes to come in 2014.

I have always had good insurance and know that I am very lucky.  In general I have been isolated from changes affecting “other” people.  My current insurance is through the high-risk pool in Minnesota.  It is expensive but the coverage is very good.

I am 61 years old and a synonym for my insurance in the coming years is going to be “change.”  Starting in 2014, I will purchase insurance through the MNsure Marketplace which is the health exchange set up in Minnesota as a result of the Affordable Care Act.  Right now I see nothing that indicates that I will get either cost savings or better coverage.  Using the calculator on the MNsure website, it looks as though my premiums will go up about $150 per month.  However that is not an apples and oranges comparison. I currently have a high deductible plan along with a Health Savings Account and the calculated amount from MNsure is for a “silver” plan with little information on the details.  So it is a waste of energy to spend much time thinking about this until the exact details are available in October.

I think that the hardest part about selecting a plan in the fall will be knowing exactly what my coverage will be.  Things like office visits and doctor fees will be easy to decipher.  As someone with Type 1 diabetes in Minnesota, it is unlikely that I will have to worry about coverage for my insulin pump.

But coverage for my Dexcom Continuous Glucose Monitor (CGM) will be problematic at best.  I have used a CGM for 5 years, so how do I prove that I need it?  I haven’t had a severe low requiring paramedics in ages.  I haven’t been having severe overnight lows.  I can hardly remember the last time I even needed my husband to get me some juice.  And why is that?

Because I use a CGM.

I suppose I can keep track of how many times the Dex alerts me to lows.  I can count the times it wakes me up at night to tell me my BG is 70 or dropping fast.  Although I always want to ignore these alerts and go back to sleep, I am very good at eating some glucose tabs from my bedside table and programming a temporary basal of zero on my pump for an hour.  I never correct a high without testing and most of the time confirm a low with a test before eating glucose tabs.  But I never do nothing.  Like many Type 1’s who use a CGM, I rarely have a night that it is not alerting me to something.  It’s a nagging parent and I don’t ignore it.

Another question will be test strip coverage.  My insurance has always provided me with the number of strips prescribed by my endocrinologist.  How will I be able to tell if my new insurance will do so?  And then we get to the issue of what brands of strips will be provided.  Will I know what the drug and supply formulary is before I select an insurance plan?

Speaking of the drug formulary, will I know what brands of insulin are covered?  Will my current insulin type be covered at a higher tier or maybe not covered at all?  Frequently I read blogs and message board posts by people being forced to change insulin types because of a formulary change by their insurance company.  To many decision makers at insurance companies, all fast-acting insulins are the same.  Those of us who use them know that the different chemical compositions and additives can make a big difference in our control and potential allergic reactions.

This fall I will be making a big decision about insurance.  I have started a list of questions to address as I compare plans.  I hope that I will have enough information to answer those questions.  Even if I don’t, I will have to make a choice and keep my fingers crossed that it is a good decision.

Change is coming and there is no exit off this freeway.

Highway of Change

The Saints We Call Our Family

Sue May 2013_Head SquareThis blog is dedicated to all the saints who are our husbands, wives, children, parents, siblings, and any other family members who live with us diabetics and look out for our well-being day in and day out.

Sue from Pennsylvania is a contributing blogger here.  She has shared the work involved with trying to get her husband approved for a Dexcom CGM which he had been on for years until Medicare denied payment. She and her husband had a  telephone hearing with an administrative law judge while in their endo’s office. They are anxiously awaiting the judge’s decision. She lives in daily fear that her husband, who suffers from hypoglycemia unawareness, will have an accident or otherwise get hurt. Sue has been contacting her senators, representatives, other Type 1 diabetics, Diabetes Forecast editors, as well as federal judges. She is even planning on sending a letter to President Obama.   This advocacy has turned into a full time job for Sue; she is truly her husband’s earthly saint.

I am also an online friend of Mary who has both an adult son and daughter with Type 1 diabetes. Her son lives on his own, while her daughter who is mentally challenged requires almost constant supervision to control her diabetes.  Mary has been a longtime member of the DOC, and has gained and shared much wisdom in the fine art of managing the day-to-day details of her daughter’s diabetes.  Mary has been working on having her daughter live in an assisted living arrangement in her own home which she will share with two other mentally challenged women.  Mary’s children are truly blessed to have her as their mother.Inspiration_Clouds

My husband has had to live with the stress of keeping both my son and me safe.  My son has lived with Type 1 diabetes for 39 years, and I for 25 years. My husband has had to bring both of us out of comas when we went hypo during the night, as well as give us glucose during the day.

Last night while our son was visiting, he decided to return home.  When he went to get his stuff, I noticed that his blood glucose meter was on the table and I told him not to forget it. He just stood there, so I told him to check his blood sugar. He got a reading of 38 mg/dl. My husband immediately got him a can of soda to drink.

After he drank the soda my son took off and got in his truck. He got his keys out and tried to start the truck. My husband pried the keys out of his hand. My son got another key and tried to put it in the ignition. At that point my husband ordered him to sit in the passenger seat and then drove him home. I followed in our car. My husband and I were still shaking on the ride back home.

My son uses a Medtronic pump and CGM. His CGM read 128 while his meter read 38 and it never gave him a warning that his blood sugar was dropping. It is my hope that I can convince him to begin using a Dexcom CGM which I feel is more reliable.  My husband has been my and our son’s guardian angel all these years.

Who are the saints you call your family?

It’s Not My Fault?!

Laddie_Head SquareMy mother was not a hoarder.  In fact, if there is anything that is the opposite of a hoarder, that is what my mother was.  She threw away everything.  Therefore I don’t have much stuff from my childhood.

But I do have my report cards.  All of them starting in first grade.

So what does this have to do with Diabetes?

My 1st Grade teacher wrote a comment that I had a hard time accepting mistakes and always blamed them on someone or something else.

Fast forward to Type 1 Diabetes.  I do fine with comorbidities.  Those are the things that go along with Type 1 Diabetes but are not caused by diabetes.  I have hypothyroidism.  It is not a result of abnormal blood sugar, but rather the same autoimmune process that destroyed my beta cells.  It is something that I could have done nothing to avoid. It is not my fault and I accept it openly and without guilt.

Similarly I have an autoimmune form of arthritis.  No guilt.  You can’t blame me.  It’s a result of my rogue immune system.  Same with a skin condition I have that comes and goes.

I am on my third frozen shoulder and that enters the murky area between complication and comorbidity.  The exact cause of frozen shoulder is not known.  One theory for why people with diabetes get it at a higher rate than the rest of the population is that high blood glucose causes an abnormal thickening of the collagen and fibrous material in our tendons and ligaments.  But other conditions such as age, hypothyroidism, Parkinson’s disease, and having a recent shoulder injury are culprits in the onset of this painful condition.  Ironically two of my frozen shoulders have come during periods when I had extremely low A1c’s, so there is definitely more to it than BG levels.  But at the same time I could never argue that I have normal blood sugar so the collagen theory makes sense.

Currently I have none of the complications of Type 1 that are commonly considered to be the result of high blood sugar levels.   No kidney disease, no retinopathy, no neuropathy.  Ha!  I’m free of complications and nothing is my fault.

The problem with that logic is that if you turn it around, you point your finger at those Complications Manwith complications and say it was “their fault.”  We all know how hurtful and untrue that remark is.  And as hard as I work to control my diabetes, I don’t know that one of those things won’t be on my plate next week.

Diabetes does not play fair.  For whatever reason, some people get multiple complications and others seem to remain relatively unscathed.  Sure, studies show that lower A1c’s increase our odds of good health and that gives most of us motivation to fight the diabetes battle every day.  But good A1c’s are not a guarantee against complications and diabetes does not sign a contract promising good outcomes for every individual.

So where am I when it comes to blaming other things and other people?  I have come a long way since 1st Grade and work hard to accept responsibility where appropriate.  The idea that comorbidities are easier to accept than complications is still part of me even though intellectually I think it is mostly a meaningless distinction.  When my rheumatologist confirmed in May that I was indeed dealing with frozen shoulder again, his first question was “What is your A1c?”  I was surprised that my first reaction was being defensive that he thought it was “my fault.”

This post has become riddled with terms such as comorbidity, complication, fault, blame, responsibility.  Those are words that never leave our Type 1 brains.

One of the best discussions about the line between blame and responsibility was in a 2/25/13 post by George at  You should read the whole post, but what has stuck in my head are these words:

“Sometimes it is good to remember that this stuff is my responsibility but not all my fault. That is the difference. It’s not my fault that I have diabetes. It’s not my fault my body doesn’t do what it’s supposed to.

But to not take care of my responsibilities and to allow bad things to happen to my body because of negligence is my fault.

The line is thin but there is a difference between the two.”

Thanks to George, there is not much else to say on the subject.

An Interview With My Sister

Laddie_Head SquareMore than once when writing about my relationship to the Diabetes Online Community (DOC), I have mentioned that I spent a huge part of my Type 1 Diabetes life knowing no one else with diabetes. That is not completely true. My older sister has Type 1.

So why do I keep forgetting that?

We have never lived closer than 1000 miles apart since our diagnoses. We were both diagnosed as adults at a time that long preceded personal computers and online communities. We periodically talk about diabetes on the phone or during infrequent family gatherings–mostly weddings and funerals. Although we like each other just fine, we are just not part of each other’s day-to-day lives, diabetes or otherwise.

So when it came time this summer for a long-planned family vacation and I am now blogging about diabetes, I decided that it would be fitting to interview my sister. I figured that I would learn as much as my readers will. My bribe of a late afternoon piña colada sealed the deal.

I did not tape the interview, so her answers are in my words and accompanied by my comments about her answers.

I was diagnosed in 1976 at age 24.  When were you diagnosed and how old were you?  I don’t know the exact date, but I was diagnosed in the winter of 1981 at age 31.

Comment:  I was able to find out my exact diagnosis date by contacting my hospital.  My sister has no interest in doing so.

Tell me about your diagnosis.  I had been going to the doctor for six months with nonspecific symptoms and receiving no diagnosis or care plan. I came back from a business trip and was so ill that I could barely make it home. I called the doctor and was told I probably had a virus. Feeling worse in the morning, I went to the doctor’s office and remember the nurse saying “You didn’t tell me that you couldn’t breathe.” I remember nothing more until a few days later when I regained consciousness in the ICU.

Comment:  We also discussed how she felt in retrospect that in the months preceding Girl with Syringesher diagnosis her doctor had only considered the possibility of Type 2 diabetes. I was immediately diagnosed at my first doctor visit and was never once treated as though I might be anything other than a Type 1. Was the difference because I was in my mid-20’s and she was over 30? Was it the speed of onset? Was it a different doctor and a different city? Or just good luck for me and bad luck for her?

What has been the hardest part of a Type 1 for you.  The lows, especially since I live alone.

Comment:  One of the hardest parts of dealing with Type 1 is that insulin which keeps us alive is the thing that can kill us. Most outsiders think that shots are the worst part of diabetes, but I agree with my sister that the lows are the worst.

Have you ever participated in the DOC?  No.  Do you even know what it is?  No.  Now that your sister has a blog, will you read it?  Maybe, if you send me the link again.

I have several other autoimmune conditions.  Do you?  No. I do have high blood pressure and take meds for that. Other than that, it’s just insulin.

Comment:   I have several other autoimmune conditions such as hypothyroidism and an inflammatory type of arthritis. But I don’t have high BP.

You have always been more open about your diabetes than I have.  You took injections in the kitchen while I always went to the bathroom.  Did you notice this?  No.  What are your opinions on this?  It’s something I have to do and it’s no big deal. It’s who I am.

Comment:  I am more open about my diabetes than I used to be. I’ve been on a pump for nine years so the issue of injecting in front of others is moot. I probably still wouldn’t be as blasé about it as my sister is.

As you consider the future, what are you afraid of in terms of diabetes and your health?  Nothing.

Comment:  When I mentioned my fear of being in a nursing home and being killed with Girl with Pumptoo much insulin or bring forced to run high all the time, my sister said her hope is to have something massive like a heart attack kill her before she gets to that point. I think we all hope to stay healthy up to the point of death, but most of us don’t get that opportunity.

What else we discussed:  When asked about a pump or a CGM, my sister said that she is not going there and she doesn’t want to deal with the technology. She uses Lantus now only because she was forced to switch a few years ago when Ultralente stopped being manufactured and her stockpile ran dry. She still uses Regular instead of a rapid insulin. I always laugh and tell her how much better things could be if she investigated some of the newer insulins and technology. But I don’t nag because her medical decisions are not my business. She does admit that when she retires in a few months she will start seeing a new endocrinologist. She will not be surprised if the new endo pressures her to make some changes.

My A1c is much lower than that of my sister. However, after decades of Type 1 we’re both relatively healthy. I would have a hard time arguing that I am substantially more healthy than she is. I do lead a much more physically active life than she does and maybe her regimen would not work for her if she tried to do what I do. But that’s only supposition.

Summary:  Although our care regimens couldn’t be more different in terms of technology  and results as measured by numbers, I think that we are definitely on the same page when it comes to the goals for our diabetes care. As my sister so eloquently summarized at the end of the interview: “My aim is to manage my diabetes so that every day in my life is a wonderful day.”

I’ll second that any day.

A Frightening Lesson for a Spouse

Sue B_Head SquareIn 2000 after my husband Marc had knee surgery, I experienced for the first time what severe hypoglycemia looks like.  After being cooped up in the house with Marc for over a week, our son came for a visit and I decided to take the opportunity to visit a friend who lived a few houses from ours. When I left the house, both my husband and son were sitting on our family room sofa watching television.

I was gone for no more than an hour.  When I came home, only our son was on the sofa.  I asked him where his dad was and he said that Marc had gone upstairs.  I went to check on Marc and found him face up, half on and half off the bed.  He was drenched in sweat and his eyes were fixed and staring.  I tried to speak to him and got no response.  I had no idea of what was happening.  I yelled for our son who came bounding up the stairs and was as shocked by what he saw as I was.  I reached for the Ambulancephone and hysterically called 911.  I was told that the EMS was on their way and I should stay on the phone with the 911 operator.  I can remember yelling at Marc not to die on me because I really thought that this was happening.

I know the EMS came quickly, but to me it seemed like forever.  They took one look at Marc and said that he was having a very low blood sugar episode.  They gave him an IV and within a few minutes, Marc started to come around.   He didn’t remember one thing about what had happened…he didn’t even remember going upstairs to our bedroom.  This is what can happen when blood sugar dips so low.  The EMS said it was at 39 which is dangerously low.

Until that day I never even knew that there was such a thing as hypoglycemia.  Marc’s sugars had pretty much been under control since he was diagnosed in 1996.  He might have Book for Spousehad a mild low here and there, but nothing that incapacitated him.  I can only say that my scare level was at its highest peak during this episode.

Needless to say, this terrifying incident was only the beginning of a long, long journey into the world of being the spouse of someone with Type 1 Diabetes and hypoglycemia unawareness.  Over the years since this first episode, we have gone through many times when my panic level rose above and beyond anything that I have could have ever imagined.  Matter of fact, there have been many instances when this first episode paled in comparison to what was to come.  That will be a blog post for a later date.

Rest in Peace, My Dexcom Transmitter

Laddie_Head SquareIn early June my friend Katie at Diabetic Advocate wrote about the death of her Dexcom G4 transmitter.  Because many of us got the G4 within a month of each other in October and November, my assumption is that we will soon be seeing a lot of posts about dead transmitters which only carry a 6-month warranty.  Sad to say I did not follow Katie’s advice to order a new transmitter as soon as I passed the 6-month mark.

Fast forward to mid-July when I was scheduled to leave for a week-long international vacation.  Three days before the trip, I got a series of Out-of-Range symbols with no readings for several hours each.  This was with my receiver in my pocket about 3 inches away from the transmitter.  When the sensor would reconnect, it said my battery was OK.  But then it would quickly go back to the no-transmission mode.  It was obvious that the grim reaper was hovering around my transmitter.

I had expected that I would receive more warning that my battery was failing.  Unfortunately I went from a perfect transmitter to a defunct one in a period of two days.  I am used to the battery icon on my pump that goes from full charge, to 3/4 charge, to 1/2 charge.  Well, that is not how my G4 transmitter failed.  There was no message that “I am working perfectly now, but I am feeling low.”  It was “Hey, you stupid lady, you should have replaced me last month when I reached six months old.”

Dexcom RIP_ColorBecause I did not have time to replace the transmitter before I went on vacation, I left my Dexcom home.  The first night in a strange condo in another country, I woke up at 2:00 AM with a BG of 37.  Oh yes, there is a reason that I use a CGM.  I hadn’t seen a BG in the 30’s in months.  That’s how good my Dexcom G4 is at doing its job.

On one hand, it was probably fine that I was without my G4 on this vacation.  We were at the beach with water activities from dawn to dusk. It was likely that I would have forgotten my non-waterproof G4 receiver in my pocket and ruined it in the ocean or pool.  But I did miss the early warnings of highs and lows that the G4 provides me.

The morning after I returned from vacation, I contacted Dexcom and Edgepark to order my new transmitter.  No, actually it was a whole new Dexcom G4 system because I was  out of warranty.

I want you to take away two things from this post.

First, you might not get much warning that your transmitter is going bad.  If you are past six months, order the new one so that you will not have the two-week delay that I had in getting my new transmitter.

Secondly and very importantly, if you paid for the upgrade to the Dexcom G4 out-of-pocket, know that your warranty only goes to the date that your 7+ system was warrantied for.  It is not based on the date you purchased your G4.  For me, my Dexcom 7+ had been replaced in June 2012.  I paid out-of-pocket for the upgrade to the G4 in November 2012.  So my warranty expiration happened in June, not November.

I am lucky that I have good insurance and I have had very good results working with Edgepark.  I know that some people will carry their hate of Edgepark to their grave, but they have always provided me with excellent service. I called Edgepark the day after I got home from vacation and had the new Dexcom system in hand 5 days later.

My pockets are full again.  My pump in my left pocket.  My glucose tabs are in the leg pocket of my cargo pants.  My Dexcom G4 is in my right pocket.  And phone, you’re back in the purse because I have no pockets left!

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.

Hiking with Diabetes – Part 2

Laddie_Head SquareI started writing the second part of this series and got bogged down in too many temporary basal rates and 50% boluses.  So now I’ll start over on a different tack.

Slowly, but surely, my hiking plan has come down to a couple of rules.  Although my blood sugars may go on a different adventure every hike, these rules/guidelines seem to remain constant.

The first rule is that safety must be the primary goal of my insulin and food regimen.  Actually safety starts with my preparations for the hike.  I have a printed list that I use every week.  On the surface it may seem a bit neurotic, but it’s very easy to go down my list every Thursday evening and confirm that I’ve packed my Glucagon kit, extra snacks, a second tube of glucose tabs, and extra socks.  My list has all the basics including a hat and hiking boots.  That might seem like overkill, but one person in my group did forget her boots one week and hiked 11-1/2 miles in the Goldfield Mountains in sandals.  So don’t laugh too hard at my list.  Then I do another last-minute list for Friday morning:  water in my camel reservoir, lunch, my phone, and a bottle of water for the car.

I’ve been brainwashed by many people on the Internet who claim that they never go above BG 140.  With lower-carb eating, consistent exercise, a pump, and a CGM, I often try to be “perfect” and make corrections on readings that should maybe be left to simmer.  Slowly but surely while hiking, I’m learning to see readings in the 130’s and 140’s and leave them alone rather than correct them.  Most of those readings eventually end up in a good range.  Occasionally the 145 turns into a 185 and that warrants a correction.  What’s frustrating is that I can never figure out why one week 145 goes to 95 and another week it goes to 200.  But I’m working hard to accept that I feel good at 140 and I don’t feel good at 65 with two arrows down on the Dexcom.  So the second rule is:  leave the heck a 140 BG alone!

My third rule is to ask for help if I need it and to stop to rest if necessary.  This rule is not always related to diabetes.  Our hikes are hard and occasionally everyone needs a rest.  Well, maybe not Caroline.  But the rest of us occasionally get over-heated, sore feet or leg cramps, so it’s not always me.  Part of being strong is the willingness to accept weakness.

My fourth rule is to do my best to understand my limitations while having confidence that I am prepared for the hike and that I am strong enough to complete it no matter how Weavers Needle_Framedifficult.  The hardest hike that I have ever completed was a 2012 13-mile loop around Weaver’s Needle in the Superstition Mountains.  Some of the elevation changes were exhausting and the day was much warmer than anticipated.  This year in 2013 I chose not to go on one hike because I thought the combination of difficulty and heat would be too much for me.  So I think I’m doing a good job of balancing the goal of pushing myself while being sensible to not put myself in a dangerous situation.

My fifth and final rule is to enjoy every minute of every hike.  Be safe, but not frightened.   Be strong, but admit weakness when necessary.  Trust that I have my diabetes under control while checking constantly to make sure that I am in control.  All in all, a sensible rule to live a successful and active life with diabetes.