The Cost of a Life

A great anger fills me right now as the Republicans tear apart the ACA without a solid plan for replacing it. There is a projection that some of the repeal will include removing provisions for pre-existing conditions, Medicare, and covering adult children to the age of twenty-six. The very image of McConnell shames me.

For now, we, our family will be okay. My husband, a great provider, works for a good company. Each year, we set aside $3500 which we will lay out in the first month of the year for diabetes medications and supplies. After the out of pocket is reached, much will be covered, but there are many other costs not billable to insurance.

But I worry, so many people aren't so fortunate. Where will they get $3500? How will they keep their children well and frankly, alive? Even with the "down payment", many health insurance companies do not cover at the same rates.

What will William do when he becomes an adult and goes to get insurance and no one will cover him? How will he survive? He won't even have the grace period until he is twenty-six, but we will have to face this in three years.

Here's a breakdown of just the basics (and there are many other incidental things we use and not covered) for you:

Per day costs with insurance negotiated rates:

• Humalog insulin: $24.26
• Test strips: $17.53
• Pump supplies: $28.00
• CGM supplies: $40.78

Total is $110.57 per day or $40,358 per year. Obviously, without good insurance, this would be a great burden. Those with lower paying jobs generally have poorer insurance options as well. Medicaid and Medicare will also likely be slashed. So, what are they to do? 

So many things sadden me about the direction of our country. This lack of foresight about taking care of those in need is one of the greatest. 

Looking Back

I found a draft I never published on my Lifetime Learning blog. It belongs over here on this blog about T1D. It's still true, though it was written last June. I guess I was feeling a bit sassy that day. Here it is:

My engineering degree taught me that there was a balance around systems. You could calculate what went in, determine what occurred in process, and measure what came out. This could all be mathematically solved so that algorithms could make predictions. This is pure bullshit when it comes to the human body and diabetes. See, the thing is, you never know exactly what is going on inside any given human body.

Two nights ago, William's BG was 150 mg/dL at 3:30 a.m. I chose to do half of the suggested correction because he had been somewhat active on a hot day. He woke up in the 80s. Perfect.

The next night, he was again 150 mg/dL at 3:30 a.m. and I did half a correction because of a similar day, and he woke up in the 200s. (And, yes, I should have caught it with the Dexcom CGM, but I didn't. We'd turned off the high alarms because...well because we were somewhere where it was annoying. Sue me.) 

Same input, same process, different output. Was he growing? Perhaps, just maybe, it was the two hamburgers and fat that he had right before bed at midnight? (I'd already gone to bed and missed knowing this.) Perhaps he was growing. Perhaps it was a full moon. Who knows.

Flying Blind

Basketball season started this morning. Almost immediately, we were flying "blind". Concrete gym walls and nylon gym shorts conspire together to block any transmission of blood glucose levels via the Dexcom continuous glucose monitor. He was 86 with 5 units on insulin on board when the practice started.

Past experience with basketball taught me that it can, if he is under enough pressure or adrenaline, raise his BG, so we decided to go "old school" and go by how he felt. Right as practice ended, he was 75 steady. A success.

Murphy was rather startled by the sound of many bouncing basketballs. She decided to climb under my chair and go to sleep.

The Pink Slide

(Disclaimer: I am not a medical person, I don't work for Omnipod, and this is only what I've observed that helped us. Please consult your own doctor.)

The Omnipod insulin pump deploys the canula for delivering the insulin under the skin by way of a needle that inserts the plastic canula and then retracts, leaving the flexible canula inserted. Very infrequently, the needle will fail to retract. In three years of usage, I think my son had this happen perhaps two or three times. That's over 500 insertions for him, but only a handful of failures.

It is, however, helpful to know when this has happened. The first clue for my son is that it is painful. The needle isn't flexible, so it is felt on movement of that insertion site. Looking in the view window of the pod didn't  help me, as the needle would be inside the canula and not visible. So how to know if this has happened?

We look at the "pink slide". If the needle has inserted the canula and successfully retracted, there will be a pink rectangle at the bottom of the yellow circle on the right.

If the needle has not retracted, it will look like a new, unused pod (below) with the pink rectangle near the top of the yellow circle. Here is an unused pod to demonstrate (I don't have on hand a pod that has malfunctioned.)

The pink slide is the best way to know if the needle retracted or did not deploy the canula at all. Upon deactivating and removing the pod, we would find that in a failed insertion the needle was still inside the canula and sharp to the touch (be careful!). Another way to know that it has deployed is that once you start the insertion process, you'll hear a series of softer clicks and one louder, stronger click from the insertion.

Anytime the needle fails to retract, it is important to report it to Omnipod customer service as the feedback helps improve the product. They should replace the pod for you. A photo of the pink slide is available on Insulet's website also.

For my son, this pump is the only pump as he said "no tubes". Any pump will have a problem now and again, but the extreme benefits for us outweigh the cons.

Again, this is based on our own anecdotal and personal experience. If you have any questions, please contact your doctor or Insulet Omnipod. 

Share

I have been watching Amazon Prime show "Humans" which is about androids which look human but have no emotions except for a few rogue androids.  I had to laugh because the non-emotional androids share data when they see another android. These rogue emotional androids won't share or their secret will be discovered. The non-sharing ask, "Why don't you share?"  I now use this phrase with my son when not picking up Dexcom signal.

Biology 101

We are studying enzymes this week in high school biology. Labs? William is his own lab. He called to me while he was reading that the chapter dealt a great deal with enzymes used to detect glucose levels in blood and urine. In the book, they show how basic test strips can be used in testing.

So what about the CGM? Continuous glucose monitors also use enzymes, glucose oxidase. Our reading in Biology Matters, a text by Singapore Math, said that enzymes are catalysts to reactions, breaking down the substrate but leaving the original enzyme unchanged. So why, we wondered, does the CGM sensor wear out in a week or two? What is happening to those enzymes?

A little Googling, and I found the explanation on Diabetes Forecast:

All day, every day, the immune system is on the hunt for foreign agents in the body to destroy. Normally, that’s a good thing, as it wipes out viruses, unhealthy bacteria, and even cancer cells. But it’s bad news for a glucose sensor that the body sees as an invader. The super-secret ingredients in CGM sensors are the coatings that help persuade the immune system to leave the sensor alone. “The key to the intellectual property is tricking the body,” says Pacelli. “Ultimately, the body wins.”

So the enzymes are under attack by the body, ultimately getting through the coatings. If you want to understand more about how a CGM works, go to Diabetes Forecast. 

It is rewarding and amazing when what we are studying helps us to understand real world applications. Now on to more prep for Thanksgiving which will be a special kind of biology and diabetes lab. Loads of carbs and insulin to balance!

Arm-Chair Diabetes

He had balked at putting the Dexcom CGM on the back of his arm, but for $25, he is willing to try it. I winced as he pushed down the plunger. It is not a small needle that inserts the filament. Luckily, it needs only to be changed out every week or two. This placement is an experiment in an effort to get a little more sleep for me.

His favorite place to wear the transmitter is on his leg - more fat there, making insertion less painful. The location works well as long as he is awake. In sleep, he rolls over on it with all of his new grown up body. The blood in that area doesn't circulate and the sensor thinks the blood there has no glucose. It sends out an alarm to wake the dead, the dead being me. It doesn't seem to rouse him at all.

I had two choices: bribe him to try a new location or run his BG higher at night than I would like. He took the bribe.

I'd like to tell you that last night, I slept like a deaf dog (because in my experience, babies don't sleep) and we eliminated compression lows. We did eliminate compression lows, but sleep was elusive again. For some perverse reason, diabetes decided to actually make him go low at night, lasting until 4 a.m. I have written Basal Program 51 (meaning I've changed his basal rate at least 51 times in the past three years) to try to stop the nighttime lows.

The red dots show when he was low. Ideally, I'd like him to be between 90 and 100 all night.

The lack of data prior to 11 a.m. was during new sensor warm-up.