side note: I have wondered since the extra glucose messes up the red blood cells, I wonder if it affects how oxygen, and how much of it, is carried through the blood stream (since it is also carried by the hemoglobin) which is kind of an issue for some of us cystics with messed up lungs.  I’m going to look more into that someday. But if I find that is true I am going to get even more pissed at the CF docs who put off CFRD testing (not mine luckily). *sigh*

Apparently a “normal” person would have an A1c level at about 5.0%.  My doctors suggest an A1c of 6.5% or a little lower, normal would be ideal, but that is darned hard to reach.  My docs find that above 6.5% it seems to really affect the CF lungs.  To me I really couldn’t understand what that number meant until I found a calculator online that could translate the number into something I was familiar seeing on my little meter tester thingy I use every day.  Here’s one I like, it goes both ways from A1c% to mg/dl.
http://www.accu-chek.com/us/rewrite/content/en_US/4.1.2:20/article/ACCM_general_article_2422.htm
Here’s a little chart on dLife:
http://www.dlife.com/dLife/do/ShowContent/blood_sugar_management/testing/a1c_conversion.html

154 mg/dl is the magic average number.  Personally, what I try to do is make sure I am at a safe, but lower number (preferably 85-95) through out the night since I am spending 8-9 hours at that level.  Recently with my Continuous Monitor I have found I am having a strange spike at 2:30-3am which means I am going to need to change my basal insulin rate at that time… but that is a whole different story.

Once last year I scored a 6.0% on my A1c test (yes, it went on the refrigerator)… I really doubt I am there again, it took a lot of hard work and discipline, but here is some tricks of how I did it…  Having a lower level for many hours while I am asleep made it easier to get to my goal A1c level.  When I spike at meals, I try to keep it under 200 mg/dl at the two hour mark by counting my carb intake as close as I can (IMPOSSIBLE when on evil evil prednisone), but I make corrections at the 2 hour mark if I have to (my pump figures out the calculation taking in consideration how much active insulin I already have in my system, which is why I am such an advocate of the pump, it does all the brainpower).  I have played with my numbers and found at my of 1 unit of insulin (which is an unbelievably small amount, it’s like a few drops!) for every 8 grams of carbs and my correction or sensitivity rate of 1 unit to 25 mg/dl (how much my bg number will drop with one unit of insulin), If I miss calculate my carb intake by 20 (two macroon cookies, who ever eats just two cookies?!) my blood sugar level will go up 62.5 points (mg/dl). HOLY!  That means I need to keep quite a close eye on things.  It never used to be that way when I was on shots, I was on a 1:15 ratio…. but then again, I was never in control of things on shots.

Back when I was out of control, my A1c level (at least the first one I really paid attention to) was 9.3%.  That number alone wasn’t enough to scare me.  But it should have.  The toll it took on my poor body was too much for it to handle and I have not escaped a few complications.  Nothing too scary, but annoying enough to get put on a few extra medications.  I wish I would have known then what I know now.

Yes it is a pain in the rear lugging around my ’90’s drug dealer style pager of an insulin pump, but it has been so worth every bit of frustration.  Even my friends tease that I could thread the tubing through some chain for an added effect. (nice, lol)  I wish I had some pics of my pump but they are stuck on my old computer stuck in storage right now, and who knows where my camera is.  I have been using a Minimed 522 pump since June and have only recently started using my continuous glucose monitor.  I was able to lower my BG with out the CGM.  Although recently the CGM has become VERY handy since I am not so much in control of my food intake.

I do have to say that the tubing that runs from my “pager” to my belly is a pain in the arse.  I get tangled in it, it never seems long enough, and my puppy’s legs get tangled in it.  I was hesitant in getting one of the tubeless style pumps but they seemed so big and obtrusive.  I haven’t tried one of those, but if I was in the market for a new pump I would look a little closer at them.

Medtronic who makes my Minimed pump has been a spectacular company to work with.  They provided me with excellent training, both via the computer and also in person.  Rumor has it they will be coming out with a tubeless pump next year and possibly for a small-ish fee I can trade mine in.  But it is just a rumor for now… (fingers crossed).

For those familiar with diabetes I was able to lower my A1C from 8.0 a few months ago to 6.0.

How did I gain control of my diabetes?  Three things had a large hand in it.

1.) My insulin pump.

2.) Eliminating high fructose corn syrup from my diet.

3.) My Blackberry, where I look up carb counts of foods when I am out and about.

In the next few days I will tell you about each….

Hope all is well!

Target values from the American Diabetes Association (ADA)/American Association of Clinical Endocrinologists (AACE)

Fasting/before-meal glucose: 90 mg/dL to 130 mg/dL (5.0 mmol/L to 7.2 mmol/L) (ADA);
<110 mg/dL (6.1 mmol/L) (AACE)

2-hour after-meal glucose: <180 mg/dL (<10 mmol/L) (ADA); <140 mg/dL (AACE) (<7.7 mmol/L) (AACE)

A1C: ?7.0%(ADA);?6.5%

The chart below provides the ADA recommendations for glucose levels in children. This year the A1C recommendation for adolescents and young adults has been lowered from 8.0 last year to 7.5

Glucose goals vary by age group because children have a higher rate of “hypoglycemia unawareness” than adults.

Benefits of Improved Diabetes Control

• Reduced risk of high or low blood sugar levels (hyperglycemia/hypoglycamia)
• Improved sense of well-being
• Lower risk of complications

Having near-normal blood glucose reduces your long-term risk of:

• Retinal eye disease by 76%
• Nerve disease by 60%
• Kidney disease by 56%
• Heart disease by 42%

Yesterday was a great day.  I had such a good visit with the docs, they almost didn’t know what to do with me since I had such a rough go for the past 8 months.  Doc thinks I should be good for a while now, especially since I have been so good with my treatments.

I stopped by mom’s after my appointment to spread the happiness and we had a great dinner and did a little grocery shopping where both of our bills ended up the exact same amount, but we got totally different things.  That was a little erie. When we left, we saw the most beautiful rainbows. My camera phone didn’t do it any justice.

To get ya all non-diabetics up to speed, a blood glucose meter tests the amount of glucose floating around in your blood at the point of the test and quantifies it for comparison. This differs from the continuous blood glucose monitor system (CGMS) that I have been trying for many months to get my insurance to pay for (still to no avail). Simply, a meter is like a still frame photograph, a monitor is more like a movie.

The UltraLink has one super-awesome feature when used with a Minimed insulin pump (I guess the most current models only), it magically beams my test result right over to the pump, which allows me to skip the step of sitting there and scrolling to the right number allowing me to dive in to my awaiting food faster. It happens in the blink of an eye. Very slick.

My biggest issue with the UltraLink is the amount of blood it takes to test. OneTouch UL requires 1microL of blood (a fairly large drop) and the FreeStyle uses 0.3microL. It is very difficult to get a whole 1microL in one splunk of my lancet. It’s hard to judge if I got enough blood before the little vampire-like test strip starts sucking my blood into the meter. I can add more blood to the FreeStyle if I didn’t get enough, but I can not to the OneTouch… Kind of like the name, I have One chance or I waste a strip and have to do it all over again. Just now I attempted to test three times before I was successful. Just ridiculous!

While chatting with other diabetics it seems quite a few have issues getting FreeStyle test strips (the disposable strips that suck the blood into the meter), because OneTouch seems to be preferred by insurance companies due to cost. Now… In my past several years (probably 5 years) of using the FreeStyle meter I bet I can count the number of wasted test strips on one hand. Today so far, I have already wasted four. I am already on my second container of four, for my entire month’s allotment, and I am only three days in to my monthly order. I really doubt that FreeStyle strips cost ten times the amount of OneTouch strips (the rate I am going through them). Now how is that for cost savings?!

The Flash… I could go on and on. Aside from my major compliant above, the Flash has a backlight, so I can see my results in dim light (restaurants, dusk outside, at 3am). Also what made me fall even more in love was what I am calling a ’stick light’. I accidentially discovered this fancy little feature not long ago and it quickly became a much desired feature in a meter for me. What it does is send a little beam of light down the test strip (just above it to be precise) so I can see where my speck of blood is and the location on the strip that I need to aim for. This was unbelievably handy when I didn’t want to leave the theater in the middle of Iron Man just to do a post-meal test.

The UltraLink is a very basic meter. It tests and sends my results to the insulin pump. That’s it. No bells, no whistles, no nuttin. No backlight, no stick light, no ability to add extra blood. And it is huuuuuuuuuge. Shoot, I used to carry entire purses as large (tiny?) as the meter case!

I definitely have more freedom with the FreeStyle. I think I will switch back as soon as I finish with my few boxes of test strips…. which since I waste so many, will be very soon!

This letter is going to an “independent” medical reviewer (probably yet another M.D. with a specialty in endocrinology, not a CFRD specialist as I ask for) and will also be read by a medical director at my insurance company who will make the final decision of whether or not they will assist me financially with the purchase of an insulin pump and continuous glucose monitor.

I put on my white doctor lab coat when I wrote this, so I am sorry if there is confusion. I tease that I think most CFers deserve a honorary medical degree by the age of 30 with all the medical stuff we go through!

Here’s the letter… (or click the link below)

To Whom It May Concern:

Due to the rarity of my health issues, my appeal should be reviewed by a specialist in Cystic Fibrosis Related Diabetes.

As my Endocrinologist has described, I have Cystic Fibrosis Related Diabetes (CFRD). This is a rare type of diabetes affecting a small, but growing population of Cystic Fibrosis patients. CFRD is unique and needs to be treated as such. It is also very challenging as it requires a treatment that is tailored to my specific needs. My nutritional intake and activity levels vary greatly on a day-to-day basis due to the effects of Cystic Fibrosis, therefore treatment of CFRD must be flexible. When my health is considered in its entirety, it is obvious the addition of an insulin pump and CGMS would be the best, most-cost effective option. Better treatment of CFRD will result in better health, less complications, both diabetic and with Cystic Fibrosis, resulting in fewer hospitalizations, less IV antibiotic treatments and such, and in turn save Great-West Healthcare money in the long run. These effects need to be considered in the decision of financial coverage of the devices. Please understand that growing up with Cystic Fibrosis has given me a medical education that most patients do not receive.

My nutritional needs require a high calorie diet due to my inability to digest food properly. CF causes thick, sticky secretions in the pancreas which block digestive enzymes. I must eat almost continuously to keep up with my body’s needs for nutrients. Despite this, I am underweight and have always struggled to maintain my persistently too-low weight. Over my lifetime I have found gaining weight is almost impossible. This affects my over all heath, as it is well known that the weight affects lung function in CF patients. Changing my eating habits is not an option.

Often, the complications of CF have an affect my appetite on a meal-to-meal basis. This makes it even more important for me to eat as much and as often as possible. When I am well, I usually eat three large meals a day and continuously snack in-between to meet my caloric intake goals. Because I eat so frequently it is sometimes hard for me to tell which direction my blood glucose levels are going since the insulin bolus’ overlap. Checking my levels with a standard point-in-time glucose meter does not show the trend-lines I need to know to treat myself properly.

When I sit down to eat a large meal, 2-4 times a day, I can never judge how much I am going to eat. I eat as much as physically possible, usually not finishing everything on my extra-large plate. I have attempted to take insulin after I eat, having counted the total amount of carbs I took in, but the delay does not work for my body. As well, I have attempted splitting my dose, taking half a dose before a meal and one more shot after to complete the dose for the accounted carbs, but this has proven to not work for my body. For all the reasons stated above, my use of an insulin pump, which would allow several to many smaller boluses while eating, and a continuous glucose monitoring system, to provide trend-lines, is the most logical choice of treatment.

Recently I was hospitalized for a Cystic Fibrosis exacerbation, which unfortunately is very common for CF patients. During my one-week stay, my blood glucose levels were inexplicably out of control. Even with the help of the nursing staff and doctors, we were unable to find the cause of my extremely variable levels. A continuous monitor would have greatly helped my ability to gain control, alerting me of times when I would start to go too high (reaching well over 400mg/dL), or when I would drop low after too much insulin was delivered to correct the high. After my hospitalization, I continued IV antibiotics at home, and added Prednisone to my regimen for one week. I attempted to keep the best control I could, but without the assistance of a CGMS and the flexibility of a pump, I was not able to maintain my goal BG levels.

During and since this hospitalization, I have been on many new medications for my CF. No longer am I able to feel the signs when I start to become hypoglycemic. My educated guess is that this is due to one of my new medications. I live alone and am very afraid I may have a severe hypoglycemic episode while by myself. Yet, I must aggressively manage my CFRD to avoid complications. A CGMS would help me be more comfortable with lower, healthier, blood sugars and would allow me to gain and maintain better control of my levels.

An added difficulty for patients with CFRD is sluggish insulin. Due to the thick secretions in the pancreas, insulin is not able to move into the system in a timely manner. This can cause lower BG levels than expected after a bolus; also another logical reason a CGMS is a necessary tool, to alert me of these lows. The ability to quickly disconnect from insulin when this event happens is another reason a pump would work better than my current treatment of using shots. There are other issues that sluggish insulin causes that affects BG control, but I am just learning about this myself.

The more tools I have in managing my BG levels, the better my health in general will be, and the less of a financial burden I will be on my health insurance. I have suffered from dehydration many times since I was diagnosed with CFRD due to my body trying to flush the excess sugar out of my body. Dehydration causes the already plentiful amounts of thick, sticky mucus, to become even more like cement in my lungs, causing a perfect breeding ground for bacteria. I have a copious amount of mucus plugs in my lungs, which is common for someone with CF, but I also believe that the amount of plugs I have is increased due to dehydration. It is well known that patients with CFRD have decreased lung function, as compared to the already decreased function of a “normal” Cystic. I would appreciate your help in assisting me to take better control of my diabetes, by giving me the tools necessary to help me, in every way, to take better control of my blood glucose levels, to prevent further destruction to my lungs and the rest of my body’s organs, which is in my interest as well as in Great-West Healthcare’s interest.

Sleep is ever so important for CF patients when both healthy and ill. This may be a less major point, but it adds to the overall reasons that a pump and continuous monitor could assist in improving and maintaining my control. When I am ill, my need for long term insulin is even more important. While I am sleeping I can not give myself a shot of Lantus, there for I must interrupt my much needed sleep to give myself a shot. If I had a pump, I would not need to do this, which would help my body recover faster from illness, possibly even preventing illness and preventing the worsening of my Cystic Fibrosis.

I am not expecting to replace my point-in-time meter with a CGMS, I understand that both are necessary and very valuable tools that can only help me gain better control and maintain that control. I would appreciate the ability to take the best care of myself to prevent unnecessary illness because of all that affects my body with two chronic diseases.

With all the complications of diabetes, as well as the complications from Cystic Fibrosis, and all of the unknown complications diabetes can cause on CF. I think it is in the best interest of my health, and the best financial interest of Great-West Healthcare to provide myself coverage of both an insulin pump and CGMS.

I appreciate your consideration of my unusual case. Please contact my doctor or myself with any questions you have.

Sincerely,

me!

My doctor said we are finally ready to pursue my final appeal of insurance coverage for an insulin pump and continuous glucose monitor. It took a while to find and compile research studies since simply there are so few (we even had to wait for one to complete!). CF related diabetes is very rare, considering the size of the general population and it is also a fairly newly discovered complication of CF only since us cystics are living so much longer now days. I have figured there are only approximately 4,000 people in the US with CF related Diabetes. Finding info on it, none the less, hard data and research studies is very complicated.

Regardless of this, my insurance companay doesn’t care that I need to take up to 8-9 insulin shots a day, if I were to follow my prescribed nutritional needs. That is on a rough day. At a minimum I take 5 shots a day. Most diabetics with Type 1 diabetes take about 3-4 shots a day, minimum. My nutritional needs are much different than someone with Type 1, which makes things even harder to balance. My insurance company is not allowing coverage for an insulin pump because I do not have Type 1 diabetes…. now does this sound fair to you?!

I sent in my paperwork the other day, and my doc is sending in her stuff soon. Please wish good thoughts and send positive vibes for me and my future pump. Hopefully this time the reviewers will actually listen to my doctor and to common sense!

Attached was the criteria Great West uses to decide who gets coverage and who does not.

Policy: Criteria #1
A. Continuous subcutaneous insulin infusion (CSII) with an external insulin pump, including OmniPod®, is considered medically necessary and is covered as durable medical equipment (DME) when all the following are met:
1. The patient has very low endogenous insulin levels as demonstrated by the fasting C-peptide requirements* as defined below OR is beta cell autoantibody positive (Levels only need to be documented one time in the medical record), unless there is an unequivocal history of diabetic ketoacidosis (DKA)

Very low endogenous insulin levels are a diagnosis of Type 1 diabetes, not Cystic Fibrosis Related Diabetes.

Beta cell autoantibody positive would lead to a diagnosis of Type 1 diabetes, not Cystic Fibrosis Related Diabetes.

DKA is not common in patients with Cystic Fibrosis Related Diabetes. (thank goodness for me!)

I do NOT HAVE TYPE 1 DIABETES!…. is there ever an exception to the rule?!!!

As if I didn’t have enough to deal with already, why won’t my insurance realize that not everyone fits in their little square box of “average”?!

To continue on…

Here is the policy of who receives coverage for a continuous glucose monitor:

“The combination insulin pump and continuous blood glucose monitoring system is covered when the cost of the combination device is not greater than the cost of the pump alone”

I am in disbelief… did I read that right?! Insurance will pay for a CGMS only if it is FREE?! WHY WOULD I NEED COVERAGE IF IT WAS FREE?!!!

The logic is not making any sense to me today… sigh.

“Great West Nightmare”

Hello all ….

Am brand new to the site..and am looking for some guidance. My son was diagnosed back in October 06, at the time we were on KY State health insurance, and a few months down the road were looking forward to getting on the pump. Just as we were getting everything in order my hubby was hired to a new company and a new insurance company…Great West. All the information from the State Insurance was forwarded onto Edge Park and Great West..(mind you this took place in July/Aug 07 and the State Insurance was prepared to get the pump.) At that point everything kinda went haywire…We were denied the pump from Great West because his c-peptide level was normal.

At this point after many calls to our primary care provider, who I have great faith in..(if not his office staff -who refuses to return my calls), am at a loss as to what to do now..Do we need to retest his c-peptides..??..

I know the insurance company is playing the “game” but I am just sick of it. The medtronic folks I had originally talked to have all but vanished after assuring me they would help out in any/all appeals…

Do I need to camp out at my doctors office until he gets on the phone and makes the next level of appeals? My son in the meantime is going thru puberty…so his monitor levels look like a roller coaster ride…from 40’s to 300’s etc..etc.. depending on the day/time and activity level.
He is athletic and wants to play baseball and football again..(he played last year just after he was diagnosed.) but all these spikes are wearing on me. Is it me or is this is just plain nuts.

I kid you not! I have GreatWest Healthcare, I am trying to get a Minimed pump through Edgepark Medical Supply, I have a normal c-peptide test, and I TOO am being DENIED coverage from GreatWest! Our stories are too coincidental. I have been in touch with this wonderful mother, and we are going to share our tips and tricks so maybe both myself and her son can get GreatWest to cover our much needed insulin pumps.