Sunday, April 24, 2016

Family Update

Since a lot has changed for our family, I thought I'd pen an update on our family life. I will try to be careful about what I say, since kids have grown more and more aware of what their parents say about them in social media, and they're generally a little concerned. I can only do my best and hope it comes off fairly. I never felt that my parents' public comments about me were anything but honest, complimentary, and true to my own experience, so perhaps I'll successfully follow that model.

My husband has finally graduated from his PhD program. He's taken a job at a small liberal arts college. We have moved out of my parents' home, and bought a house here on Main Street in a small town just a few miles from the school. We finally have an income and INSURANCE! Real health insurance! Because my husband's income as a college professor is modest and thus our family's income is modest, the kids do qualify for the state health insurance plan, which I have some mixed feelings about.

The Pious one, my first-born, whose birth was the longest and most difficult of all four, is now 6 years old. He's got new friends and new activities in our new town, though he misses his grandparents, too. We teach him at home, and I would say he falls somewhere between first and second grade in most subjects. Sometimes it's hard to know where he stands, since our curriculum falls somewhere between things I remember learning and enjoying at that age, things I and the state of Maryland Board of Education think he should know, and things that interest him.

Braveheart, my second-born, whose birth was induced but pretty easy, is now 5 years old. He's also got new friends and new activities in our town, and also misses his grandparents. He's probably most defiant of all my boys, but also surprisingly loyal. We haven't begun formal schooling with him, and we'll start this fall.

The Statesman, my third-born, who is missing a kidney and helped me avoid induction with the shortest of my four labors, is now 3 years old. He is very affectionate towards me, often telling me he loves me and that he wants to go everywhere I do. He's learning some important practical skills these days, noticing patterns, and trying to memorize the rules.

The Scholar, my fourth-born, whose birth was painful, will turn two in a couple of months. He was so unhappy the first few months of his life, but has really become a smiley, talkative, and strong little boy. He's constantly on the go, and mostly learning what happens when he falls down, runs too fast, or climbs too high.

So that's our update. I'm very happy here, too. The pace of life is slower. People tell me small-town life will wear on my eventually, and that might be true. But for now, I'm enjoying the liberties of a slow pace quite a lot. I don't have an endocrinologist here, since when I tried to schedule my appointment, it was going to take many months to get one. I'm going to see if a general family practitioner can meet my needs for now, since I do pretty well managing my own insulin pump levels. The CDE I met with at first doesn't feel comfortable with the Dexcom system, so I'll have to find someone else for when I do need help. I am trying to arrange a long-distance situation with my newly-minted CDE friend and former co-blogger, Jenn, so that my own ideas about my care don't become an echo chamber. I'll let you know how it works out!




Sunday, April 17, 2016

Continuous Glucose Monitoring

In my last two posts, I referred to something called a "CGM." But since it's possible that there are other people even less tech-savvy than myself, I will try to explain it a little bit.

"CGM" stands for "Continuous Glucose Monitoring." It is a separate sensor inserted under your skin, similar to the infusion set inserted under your skin for the insulin pump to deliver insulin. But instead of delivering insulin under your skin, it collects data about what's happening to the glucose level in your interstitial fluid. Like insulin pump infusion sets, it is inserted into subcutaneous fat. Unlike insulin pump infusion sets, it is a small wire a bit longer than the infusion set tube.

This is a picture of the sensor after it's been inserted under your skin:

Continuous glucose monitor sensor after insertion
This picture is actually not only the sensor. The sensor is attached to the tape-y, clear blue-ish, purplish plastic part and lying under the skin. The gray piece (prominently adorned with brand name advertising) is called a transmitter. It organizes the information from the sensor wire, and sends it to a receiver.

Continuous glucose monitor receiver showing blood sugar information from the sensor
The receiver is what interprets your blood sugar for you. There's a few buttons on it that you can't see from the picture, but they aren't what's most interesting about the system. It's those little black dots that are so interesting! Together, they form something called a "trend graph." Every five minutes, a new dot pops up on the receiver, showing you what your most recent blood sugar is. I think the blood sugar reading is a few minutes behind, and you have to calibrate it so that the transmitter gives a proper number to account for the conditions it's sensing in your interstitial fluid. But check it out! A blood sugar reading of 116 requires a very different response when you are going up, going down, or staying the same, right? And have you ever wondered exactly what happened to your blood sugar in between meals? How, exactly, did you get to that 120 postprandial? And when you wake up high in the morning, was it a rebound from a low, or was it high for hours on end?

I got the Dexcom CGM back in December, and have been loving it. Medtronic also makes a CGM, but when I tried it a few years ago, it was so difficult to calibrate that I was never quite sure the reading it was giving me was an accurate one. I gave it up, and only took this one up again after Jenn and my friend Chris Hannemann said that the Dexcom system had improved upon the Medtronic one, especially in the manner of calibration.

The other wonderful perk of this machine is that it alerts me when my blood sugars are low and when they are getting high. Hypoglycemic incidents still happen, but sometimes I have been able to prevent them, and I have certainly had the chance to respond much sooner than I did before. Hyperglycemic incidents likewise still happen, but I am alerted to the rise in my blood sugars WELL before a 250 mg/dL 2-hour postprandial, so I can keep myself out of a high blood sugars for a little more of the time.

I know some people don't wake up when their hypoglycemic alert goes off in the middle of the night, but I don't tend to have that problem. However, if it doesn't wake me up, it will very likely wake my husband up. Between the two of us, we don't miss a single low. This has greatly improved my ability to avoid the scary lows I've had.

Do you use a CGM? What do you like or not like about it?

Friday, April 15, 2016

OpenAPs

Diabetes technology is kind of like iPhone technology to me. I wait to see what everybody else seems to like about their device, then I think about whether I really need it for a little while, and usually I decide I'm doing just fine on my own and still don't buy it. I didn't even own a cell phone until January, for example, and my tech-savvy mother-in-law was the one who picked it out for me.

But since some people with diabetes read this blog, and some people with diabetes care about technology, and there are multiple websites and even an academic journal devoted to the topic, I thought I would mention a piece of diabetes technology news that came splashing across my radar recently.

My cousin and her son, and a friend of mine, all affected by Type I diabetes, have recently done some clever software and hardware rigging to create a system that functions like an artificial pancreas. Apparently it is especially hoped that it may help keep blood sugars steady, especially during the overnight when even the most well-calibrated basal rates don't account for minute differences in daily activity and food consumption from the previous days. It works by adjusting basal rates on the insulin pump according to blood sugar information from the CGM, according to a rules in a program written by the user. This can prevent the severe nocturnal hypoglycemia I wrote about in my last post, since the pump's basal rates are in constant feedback with the CGM and will be reduced until blood sugar rises again. Boluses still must be given manually.

The system is called OpenAPs, and they are collecting data from pump and CGM users to improve it all the time. They also call it a "DIY Pancreas," which makes me smile since "DIY Diabetic" is a label I needed years ago when I started insisting that I be the one to make the final call about my own adjustments to my pump. I'd love to try out the OpenAPs system some day.

I went to high school with the man, Chris Hannemann, who is leading the charge on OpenAPs. At marching band camp one year, he saved me from a low blood sugar that was almost amusing (at least, in hindsight, once it wasn't embarrassing anymore). He has written about his experience in this post. Check it out!

Sunday, April 10, 2016

Dead In Bed

Did you think that might be what happened to me some time in the last year and a half? I am happy to report that I am still alive and well, just not feeling like I had much to say on the topic of diabetes and pregnancy or birth. At least, not that seemed worth sharing out loud. You know how sometimes you'll have something percolating in your mind, but it's not quite ready to drip out for consumption by others? That is sort of how all my thought trails about diabetes and childbearing have been in the last 15 months. Very often these trails about how to have diabetes and children at the same time lead me into anxious ends, fearful ends, dead ends. In reflecting back, a great deal of all my pregnancies have been spent traveling these anxious paths, many of which I've shared here.

I cut a new one of these anxiety-ridden paths when I learned about a syndrome for Type I diabetics called "Dead In Bed Syndrome." Have you heard of it? It is a phenomenon occurring in Type I diabetics only, and it has been compared to sudden infant death syndrome (SIDS). An average Type I diabetic, apparently young and healthy, will go to bed without showing any symptoms of any kind of distress, and simply fail to wake up in the morning. It is hypothesized that a prolonged low blood sugar during the night may cause cardiac dysrhythmia that results in death, but that is only a theory and no one really knows. A CGM sensor on at least one sufferer failed to alert him to the trouble with his blood sugar, but did show that his blood sugar was below 30 mg/dl for a couple of hours before he passed.

So if you're a diabetic, it's one of those things that you're glad to know about...but only kind of.

I have had my share of nighttime lows, both within and without pregnancy. There have been a few nights where I have slept so deeply that I wonder if my blood sugar was below 40 mg/dL for a few hours and I was more unconscious than sleeping. I once woke up to my alarm clock a full twenty minutes after it started buzzing, and my blood sugar was in the 30s when I finally got up to check it.

For now, I have planned to get a CGM of the Dexcom variety, but this is obviously not a fool-proof method of prevention as mentioned in the example of the man above. I have set an alarm clock for myself to wake during the night (at 2:00am), but this is also not a fool-proof method of prevention as noted in my recent experience. My husband is gone at night during the week, so I'm feeling rather vulnerable to the risk this poses for me and for my children. Who will be there to care for the sweaty, thrashing, sleep-talking mess that I sometimes become when my blood sugar gets low during sleep? Will it be missed, and I simply slip from this life into eternity?

The one thing that I will say about this is that low blood sugars at night happen whether I'm pregnant or not. These last 21 months have taught me as much. I will not let my endocrinologist imply that future childbearing is inadvisable simply because of low blood sugars.

So I will do the only thing that seems reasonable to do when you're confronted with fear for your life and you've done everything else you can to prevent it: every night, before I sleep, I will entrust my children and myself to Almighty God, and pray that He cares for us both in this world, and that He guides our passing into the next.