CGM Trial: Gratitude and Curses

Some notes about the things I am most grateful for and some things that have just been bothersome about the Navigator.

Grateful:

• Seeing B.S. 24 hours a day
• Using line graphs to determine trends and problems that I can fix
• Impressive CGM's receiver and transmitter distance range: I left my receiver in my bathrobe pocket after getting dressed and it was still tracking me downstairs for hours.
• Ability to shower with transmitter, but can't really imagine that other companies wouldn't create something with the same capabilities. For God's sake, we take showers once in awhile.
• Love the warnings for projected highs and lows, especially the lows. Avoided a few hair situations
• Transmitter is relatively small
• I just learned that when looking at a particular screen, you can hold the up or down button to keep the screen active and not time out. Wow. Good to know!

There maybe lots more I love, but I am anxious to skip to the curses and get them off my back!

Curses:

• Calibrations lately have been extremely inconvenient IF I don't put the sensor on at night. I changed it at 10:00 a.m. last time and the calibration bell rang at 8:00 p.m., while I was at an event. I waited until I could calibrate it around 10:00 p.m. and the calibration failed because my blood sugar was dropping too fast. This meant I had to wait 30 minutes, and again it failed. This went on until I finally got the calibration about 11:30 p.m., BUT I had to calibrate again in two hours--1:30 a.m. I was TOTALLY exhausted and was very frustrated by this. I will not put this on again in the day time. Same problem can happen with nighttime application if you are in meetings first thing in the morning. Overall, the calibrations have been frustrating when you are not perfectly free to take care of your diabetes FIRST. Sometimes that is not possible and at times this blessing can feel really inconvenient.
• The darned sensor and transmitter are vulnerable--really. I was out of the shower, putting on lotion, and I bumped the transmitter as I was doing my arm. At first I was concerned about the lotion messing up the adhesive (I had no overbandage; I thought I learned this lesson already), but I actually dislodged the transmitter from the senor base. It fell off inside my shirt sleeve about ten minutes after I was dressed. This prompted the above a.m. re-insertion.
• Screen is HARD to read.
• There are no "back" buttons on many screens you would really like to go "back" on, like the line graphs--you are looking at a two hour screen and you want to see the six hour; you have to wait like 30 seconds for it to time out, and then scroll through three screens to go back to the line graphs.
• The alarm sound is annoying; really grating on your nerves. Wish I had sound options (like a cell phone) since this is something I am living with daily and have to hear every day.
• The HIGH blood sugar alarm should have an option that if an "insulin" event is added, the alarm shuts down for 30 minutes. If you are over 300 and you give insulin, it takes awhile for you to come down, but the alarm keeps going off ever 5 or 10 minutes. Now, there is a "mute alarm for an hour" option, but I need to be warned if I haven't dropped in 30 minutes. Otherwise, I just go about my day and perhaps my infusion set is clogged, I won't know if I mute the alarm. Did I mention I don't like the alarm sound?
• Sometimes I can't find the receiver. I leave it upstairs, in my car, in my purse, on my desk, it falls out of my bag, is in my back pocket of my jeans, fell in the crack of the couch, but unlike my cell phone, I can't call it to track it down by sound. This is a real problem, but I can't think of an easy solution. The company that fixes this could rule the market!
  

OK, that is enough. I am obviously VERY grateful for the opportunity to be in this trail. I hope that some of the annoyances are resolved with use and the company listening to the users. This technology is AMAZING. I am awed at the potential, and even how far the technology is applicable to my life. I know the above curses are VERY easy to fix; they are just background noise to the benefits I have received.

CGM in NYC

Well I loaded up my CGM supplies (and a LOT of other stuff) and headed to New York City on Thursday for meetings. When I finally arrived after MANY delays due to weather at 1:30 a.m., I put on a new sensor and transmitter.

The following morning, I was unable to calibrate it--the sensor had failed. SO, I waited until 10:00 p.m. on Friday to try again, because it just doesn't make sense to do it any other time with the 10 hour and 12 hours calibrations (I had room mates and didn't want the thing beeping annoyingly at 1 a.m.).

Friday afternoon, after my calibration failed , I found that my BG kit with both my blood glucose meter AND my CGM receiver had fallen out of my bag at a previous appointment. I trucked back across town to get it, deciding that I MUST leave the Receiver/BG Kit in the hotel in case that happens again.

I put on a second sensor Friday night and it failed to calibrate the next morning. I was furious! Here I am eating NYC bagels (like 80 carbs), gnocchi and pizza and I don't have my beloved CGM. I NEVER thought to bring more than two sensors, because I should have only needed one for a four day trip, so I was out of luck. But I left the Receiver (my back up finger stick B.G. test) in the room safe and sound, then went shopping.

At FAO Schwartz, I started to feel low, so I pulled out my regular blood glucose kit to check my sugar and low and behold--ERROR. Oh! For Gods sake! I tried three more times, trying to warm the battery (which was almost new), tried a different bottle of strips; nothing worked. I ate three glucose tablets and begged my friend, still at the hotel to meet us for lunch and bring my CGM receiver.

Overall, the trip as fantastic, my blood sugars were good, but I expended an enormous amount of energy worrying about my equipment and my blood sugars, and trying to solve these problems. I was dreadfully paranoid the rest of the trip, constantly feeling my bag for the B.G. Kit, my cell phone, my camera (I felt like I was going to lose everything I owned; it all seemed so precious). This was hard on me emotionally and you know what? It is NOT easy to travel with diabetes.

I put a new sensor on last night when I got home and my first calibration failed this morning. I was about to throw the CGM out the window, but I tried again and found that my blood sugar was dropping too fast to calibrate. From 150 to 90 in about 10 minutes, then to 82 in about five minutes. I was up and running after a call to the friendly Navigator Support team. We suspect that my first insertion of the sensor in NY had too much blood (which it did--I was exhausted and didn't really clean it well) and that might have also gotten on the transmitter where it touches the sensor.

I am really glad to be home and glad to have this thing back on my arm and working.

I will be downloading the CGM software tomorrow. I finally upgraded my hard drive and am anxious to test out the Navigator Co-Pilot.

© 2007 Photo by Wendy L. Morgan

CGM: Back to Normal

My test results since last night have been right on target, back within 10 mgdl.

Also, found an article from the University of Clagary Titled, "Discovery opens door to new diabetes treatment: Discovery of a critical role for sensory nerves in diabetes opens door to new treatment strategies." Intersting and worth a look:

http://www.ucalgary.ca/news/december2006/diabetes-discovery/

CGM: Discrepancy

Well tonight is the first time I have seen a more than 10 mgdl discrepancy in my blood sugar readings on the CGM vs. a finger stick test.

I ate a snack and forgot to bolus right away and after while I was 277. I wanted to confirm it with a finger stick and it said 315.

Maybe when my blood sugar comes down a bit, it will be more stable. Interesting note.

CGM: Inserting a Sensor (Photos)

I have finally downloaded the photos of inserting the sensor. I have decided that I definitely prefer having the sensor on the back of my arms vs. my tummy.

First step is to clean the site with alcohol, then use IV Prep to prepare the skin for the adhesive. The next step is to place the sensor inserter against the skin. You peel the adhesive off, before you do this, so it helps keep the inserter in place.

© 2007 Photos by Wendy L. Morgan

Next, you twist and then pull out the yellow safety.

Next you push the big grey button on top with your whole finger, evenly across the top and that releases the sensor into your arm to a depth of about 5 or 6 mm.

Now, you squeeze the blue buttons at the base of the inserter on both sides and gently lift the inserter away from the sensor.

Next you have to check for blood and use a gauze to dab it up. I rarely see this much blood and it does not hurt anymore than an infusion set, actually less.

Now you slide the transmitter into the sensor unit and the sensor base.

You have to really squeeze to get it locked into place. I have started using an overbandage (Tegaderm) every time I put it on, so I have no problems with the adhesive coming loose before the five days are up. Seems to be working fine.

CGM Trial: 30 Days

So, I went to my doctor today and also checked in regarding the trial. I had to answer about a million questions about my experiences, but they also had some surprising questions about calibration time and about the size of the transmitter. Some of them were tough to answer:

• Would you prefer to have your first calibration and readings begin at 2 hours rather than 10, even if it meant accuracy might be compromised for the first eight hours of readings? Hmmm.
• If readings began with a first calibration at two hours, would you be willing to calibrate (with a finger stick test) every two hours for the first eight hours of readings? Hmmm again.
• Would you be willing to insert a new sensor and wear it with the old sensor on during the calibration period? Heck yea!
• If the transmitter was half the size, would you mind if calibrations began at 10 hours? Uh, no! I would love this thing to be smaller.
• Would you rather the unit length and width be reduced or the thickness?

I found these questions intriguing and they made me really happy. They are actually interested in what we think and may make changes based upon our collective comments. I am so glad I get to tell them my opinion, however the questions that were like the above had me really thinking hard. The biggest benefit of the Navigator so far is the accuracy. It is dead on compared to my finger stick tests (within 10mgdl). So, am I willing to sacrifice accuracy (even if it is just a chance of things being off) to get my readings sooner? Probably not, but I could not answer this question with a strong "no." Waiting 10 hours for calibration is a long time, however, if I insert the new sensor at 10:00 p.m., my first calibration test is at 8:00 a.m. Next calibration is at 10:00 a.m. The next is again at 10:00 p.m.

That is not so inconvenient. The real issue is when you insert it a 5:00 p.m. and you have to do a check at 3:00 a.m. and again at 5:00 a.m. There is a simple solution, instruct people to do it at night.

Two hour calibration would be nice though. There is a moment of great joy when the readings begin. My doctor made some basal adjustments today and I have been humming along in range (70-170) all day; just one bump to about 185 after dinner.

I also had a major "ah ha" moment, that I had completely forgotten about since before the birth of my child (that was six years ago). I run high a five to seven days before my period. I was around 200 the whole darned week. The day after my period started, bam! back to normal. I can't believe that it has been so long since I tracked those changes in my body. I really wasn't taking my sugar enough to notice the trend. Hence the brilliance of this little CGM. Doc helped me set a temporary basal patter with a .1 unit/hour adjustment for starters. We'll see how that works; I bet I need more.

One request I made in writing on my survey is that the study continue a total of six months, not just three. By the time I get my first HbA1C in March, I will have just gotten into the swing of things. I really want to see two readings, three months apart. I was in shock at my last reading--8.5; that is the highest it has been in 10, maybe 12 years.

I promise to post more pictures soon. I know, promises, promises, but I have been really short on time.

Personal Renewal Group for Mothers Living with Diabetes

As mentioned in my profile, I am working on a national initiative to help women reconnect with who they areand experience greater balance in their lives. Last year I joined a “Personal Renewal Group” for moms, led by a career strategist and work/life balance coach, Renee Peterson Trudeau (http://www.reneetrudeau.com/). Our small group of mothers (about 15) meets once a month because we all want some kind of change in our lives – less anxiety or perfectionism, deeper connections with family and friends, more satisfying relationships. Working together, we are changing our lives for our own good (and that of our families).

At the urging of PRG moms, Renee has written “The Mother’s Guide to Self-Renewal: How to Reclaim, Rejuvenate and Re-Balance Your Life,” launching in May 2007 (with limited advance copies available on her website). The book is designed as a year-long journal that supports women as they explore their values and attitudes toward parenting, work, relationships and life-long goals.

This spring Renee will train women to start and lead their own groups for mothers in their communities. I have been working with Renee promoting the book and will be trained as a PRG facilitator. I will host PRG groups within my circle of friends, but am also planning to offer PRG's supporting mothers of children with diabetes and also mothers who have type one diabetes in Austin.

PRG has helped me prioritize what is most important and has restored my family’s balance as much as my own--my life has changed so much for the better. Diabetes is an all-encompassing disease that weaves its way into our entire family's life. Mothers usually put their kids first, but caring for children with diabetes is especially draining and it becomes very hard to fill your cup first. Mothers who have diabetes are busy being mothers--diabetes self-care often takes a third or fourth seat at the table. PRG and The Mother's Guide gives stressed and harried mothers permission to care for themselves, reconnect with who they are and create balance from the "inside out."

If this speaks to you and are interested in learning more, please e-mail me at PRG at WendyLMorgan.com.

CGM Trial Day ????

I'm sorry for the long delay in posts. I have been traveling and have had a heck of a time catching up after the holiday.

I had to remove the sensor and transmitter before I boarded the plane. I also had to remove the battery from the transmitter and "unlink" the receiver from the transmitter, so no radio signals would be flying around during flight. Not so technical, but generally accurate.

Other than having to take off the sensor earlier than the five days, this was not much of a problem. My travel schedule allowed me to re-apply the sensor and transmitter when I arrived and by early morning the following day, I was tracking again.

I went to Jackson Hole, WY and I am from Texas, so imagine the weather shock! I found my blood sugars ran exceptionally high during the trip and I had a heck of a time adjusting my ratios. It was nice to have the CGM, but to see constant 200s for hours on end was frustrating. I’d try a third bolus correction in an attempt to bring it down, eventually crash to 50, then bounce right back up again to 200. Not much time was spent above 300, but my insulin just didn't seem to work right at 9,000 feet.

The screen now has a dark spot on it, probably from being in my pocket, but that is where I keep it and it should hold up better.

Also, the adhesives I was provided to cover, and keep the transmitter/sensor affixed to my skin have permanently affixed themselves to the transmitter surface. I have tried to get the gunk off, but it won’t budge. The trial folks specifically told me NOT to use Unisolve, so I will ask at my next follow up visit about keeping the unit clean without damage. They say to use alcohol swabs in the manual, but that does not work.

I have checked my blood sugar against the unit several times and it is still reading within 10 mgdl. I am impressed with the accuracy; however I had two instances where I got a “Projected Low Glucose” (a 30 minute projection of a low that can also be set for 10 or 20 minutes) at about 5:00 a.m., I drank a juice, even though I was about 150 and then just climbed from there. As I said this only happened twice and I wonder if my hormones kicked into gear increasing my blood sugar around the same time my insulin was peaking and starting to show a low glucose trend. It hasn’t happened since, so who knows.

I will post some photos of inserting the device tomorrow. I will also post some photos of the dark spot now on the screen.

I did not have any problems with the unit because of the cold in WY, but that is mostly because I wore it on me. I went dog sledding and it saved me from a low!

Now I am just trying to get over the holidays, and get back on a schedule where I can take advantage of always knowing my blood sugar. The holidays are always tough when it comes to food, and having the CGM was a blessing, but I can’t say it was any easier to control my consumption!