Looking back and looking forward
I know that I've been very quite on the blogosphere for the last several weeks. I appreciate more than I can express all the comments and e-mails asking me how I'm doing and wishing me the best.
I won't bore you with the details here except to say that I'm in the middle of some type of depression. It's not earth-shattering and for those of you who have diabetes, it's probably not entirely unexpected. Taking care of a chronic disease is a big burden and it takes its toll. The good news is that I'm working pro actively to get this under control and get through it. And in the meantime I'm focusing on essential activities because I've not got a whole lot of energy for other things.
It's been a busy year on the blogosphere and busy one for me. I've been blessed with a lot of accomplishments over the last year, in no particular order:
- I met Allison and Mel in Boston. It's always fun to get together with fellow diabetics! If you're going to be near Boston in 2008, please let me know.
- I got to some meetings of the insulin pumpers group that meets in Woburn, MA each month. A fun, supportive and informative group. Every state should have a group like this.
- I marked my 35th year with diabetes by raising over $11,500 for research in a diabetes bike ride. Hint: it's not too late to support this.
- I received an award from Lilly and Joslin for 25 years with diabetes. Thanks Dr. Spatola for organizing this one.
- I setup the diabetes search engine. It now indexes over 800 sites and I like to think that it's helpful for folks.
- I joined the great TuDiabetes.com social networking site for diabetes. Big kudos to Manny for starting this.
- I worked together with Beth to start the diabetes365 project (originally her idea). As of today there are about 1,750 photos that give some insight into what it's like to live with diabetes.
- I almost completed NaBloPoMo for this year. I didn't post for every day of November. Next year will be better.
- I started using the Dexcom STS continuous glucose monitoring system and moved to the Dexcom SEVEN system later in the year. Life with a CGM is a lot easier, though it still has its frustrations.
- And of course I posted many blog entries. Along the way I hope that I informed some readers. I know that I learned a lot from your comments and I also managed to get lots of practice with my writing skills.
So what's in the cards for 2008?
- I'm getting some blood drawn in January as part of the research for Dr. Faustman's work on a possible cure for Type 1 diabetes. No, I'm not getting an early version of the cure, I'm just donating blood samples for the work. I hope to meet her and ask a few questions, I'll let you all know what I learn.
- I'll keep blogging, though maybe a little less.
- I hope to get involved in another fund-raising bike ride in September.
- Thanks to Wingman, I may take part in a run to raise awareness for diabetes.
- I'll continue to post photos to the diabetes365 project.
- As always I'll hope and pray for some real progress towards a cure for type 1 diabetes.
Happy New Year to everyone. I hope that 2008 will be a peaceful and better year for all of us.
Labels: CGM, Dexcom, diabetes, diabetes365, friendship, research, review, tudiabetes
Some basics about the Dexcom
I got two similar questions recently about the Dexcom 7 continuous glucose monitor (CGM) and I realized it's probably worth summarizing what I know about it for those who might be interested in using one. So here's a fairly long post with most of what I know about this interesting device. Note that the Dexcom 7 is officially approved for use in adults, but there are some folks on that list who are using it successfully with their children.
For the record. I start using the Dexcom 3 in March 2007, after a one week free trial. I switched to the Dexcom 7 on July 24th 2007 and have been using it ever since. After 35 days I'm on my 3rd 7-day sensor, so I'm getting an average of at least 12 days out of each one. Remember the sensors are approved for 7 days of use, but most people continue to use them after the seven days are up. I'll post in the future about how to do this, because it's not immediately obvious for everyone.
There are several bloggers who have posted a lot about their Dexcom experiences. You can find a list using the
Diabetes Search Engine. Anthony has his
Dexcom Seven blog, and Clemma has her
Comrade Dex blog, both of which are very informative.
Trying out the Dexcom
You
should not purchase a Dexcom without first trying it out. The cost of a Dexcom 7 system with four sensors is $640. And each box of four sensors is $240. And, no you cannot buy these individually.
I do not (yet) have insurance coverage for the Dexcom or the sensors. I'm hoping to start filing for this sometime during this week. From the
Yahoo! diabetescgms group it sounds as if more companies are starting to cover the costs of this system. Unless you know that your insurer actually covers it, you need to consider the ongoing Dexcom sensor costs ($60 each for at least 7 days) before deciding to use one.
On the Yahoo!
diabetescgms group, someone pointed out that CGMS users seem to be broken into 4 groups.
- Those for whom the Minimed REAL time works well.
- Those for whom the Dexcom 7 works well.
- Those for whom either system works well, and
- Those for whom neither works well.
Unless you try it out, you can't tell whether it will work for you. Contact your endo's office and see if they'll arrange a trial for you. You will need a prescription from your endo before you can get a trial. Originally I tried out the Dexcom 3 for a week, which allowed me to make a sensor change. I think this is crucial, so make sure you get to try out the Dexcom 7 for
at least 9 days, ideally aim for 2 weeks. And make sure you get a copy of the software when you're doing the trial, the system is much better when you can actually use the (PC-only) software.
Sensor Insertion
Inserting a Dexcom sensor takes
some work. With the Dexcom 7, the insertion is a
lot less painful than with the Dexcom 3, but it's still tougher than for a pump. There's no spring-loaded inserter, you just have to
jab it in. I continue to use it in my abdomen, but I know several people on the Yahoo!
diabetescgms group have used arms and buttocks.
Once the sensor is inserted you connect the transmitter to the back of it. This combined unit is waterproof, and you can shower or swim with it and don't need to cover it in any way. The waterproofing is done by having the transmitter lock
very firmly in place on the back of the sensor. You can
only remove it using the plastic 'safety lock' that stops you from first accidentally inserting the sensor.
The Dexcom requires care and feeding. You need to calibrate it at least twice each day with a test taken using a OneTouch Ultra meter. Calibrating means you take a test with the OneTouch and then connect the OneTouch to the Dexcom via a supplied 5-foot cable, the synchronization takes about 10-15 seconds.
Alarming
You can change the alarm settings on the Dexcom with one setting for the low alarm (changeable in 10 mg/dL increments) and one for the high alarms (20 mg/dL increments). There's a hard-wired alarm that triggers at 55 mg/dL.
Except for the hard-wired one, the alarms only trigger each time the readings cross the boundary from normal to high or to low. So if your high alarm is set to 160 and the reading goes from 155 to 164, the alarm will trigger. If the Dexcom is reading 210 an hour later and the numbers never went below 160 you will
not get another alarm. In the case of the hard-wired alarm, you'll get another one 15 minutes after the first.
The alarms can be
loud. The first one is a loud buzz. If you miss it, or don't acknowledge it the next alarm is a loud buzz and noise. This happened to me yesterday and three co-workers in surrounding cubes wondered what it was and whether I was OK. So if you're easily embarrassed, watch out for this. In a
recent webcast, the Dexcom CEO mentioned that the next generation Dexcom (no idea on dates) will have must more customizable alarms.
The Receiver
The receiver unit is fairly large, a little bigger than most of the insulin pumps available today. I usually carry it in my jeans pocket. It comes with a carrying case, but this is basically unusable. It sticks out very far from your belt and you can't connect the sync cable to it while it's in the case. And remember that it needs to be within 5 feet of the transmitter, so carrying it in a purse may not work.
The Dexcom receiver must be synchronized with a OneTouch Ultra meter at least twice a day. The recommendation is that you check your blood glucose using the meter before making decisions based on the Dexcom readings. In practice I probably test an average of 5 times a day, so don't expect a huge decrease in finger sticks because of the Dexcom. Note that Dexcom provided me with the OneTouch Ultra when I purchased my Dexcom 3 system, I assume they're still doing the same with the Dexcom 7. I also know that many insurance companies won't cover you for two makes of test strips. So if you're going to use the Dexcom, you're forced to switch from your current meter to the new one. The good news is that the Dexcom software will show you both the Dexcom system readings
and the meter readings.
The picture below shows the 9-hour graph from the new and the old Dexcom receivers.
You need to charge the receiver about every 3 days, with the supplied charger. It's about the same size as my cellphone charger. I generally do this at night by plugging it in and then sleeping on top of the charging cable so the Dexcom can be beside me in bed. When sleeping I usually leave the Dexcom beside me because the receiver needs to be within 5 feet of the transmitter/sensor. And leaving it on my night stand means I may not hear it when it alarms.
With the Dexcom you'll get their new data management software. I complained loudly on this blog about the original DM software. The new version is
much better with lots of useful and useable
statistics. You can also
export the data as an XML file, or a comma-separated values (CSV) file which Excel can read.
What do I think about the Dexcom?
In April 2007, I described this as like having a
superpower. And I still feel like this about it. My April A1C, just after starting the Dexcom, was 8.2% and my July A1C was 7.0%, a 15% reduction. I don't think I could have accomplished this without the Dexcom. It's also partially due to using Symlin more, and I really found the Dexcom invaluable to help me manage using Symlin.
For me, this has been a life-changing device. Diabetes management has become a lot easier all round. But there are also times when I want to throw it out the window. If I'm woken in the middle of the night (tonight) by a sensor alarm, it can be very annoying. If the usually smooth graph starts to have a lot of gaps in it for no reason that's also a pain.
But I'll stick with it, and I'm aiming for a further improvement in my A1C.
I hope this writeup helps you some in deciding about this device.
Note: I still own shares in Dexcom. I try not to let that influence what I say in any of my posts.
Labels: CGM, devices, Dexcom, Dexcom SEVEN, diabetes, review
Dexcom STS Software review
Warning for those of you who are faint-hearted. This is
not good software. So this is a very critical review
After some pestering, I finally received the download software for my Dexcom CGM system. I paid for the system on March 30th, and received the software today April 10th. It wasn't worth waiting for.
In a nutshell, this is extremely poor software. According to the Dexcom Help About screen, this is version 9.0.2.18. Why they would use a complicated numbering scheme is just an indication of how little they're thinking of the user.
To me this feels like beta software. There was no attempt made to give the user any level of control.
You can only do three slightly useful things with the software. Download the readings from the Dexcom receiver, view up to seven days worth of readings at a time, and print a report showing the readings over an extended period, with seven days of readings summarized on each page.
The screen to view the readings is shown below. You can see strong correlation between the Dexcom readings (blue circles) and the Ultra meter readings (red X marks). If you hold the mouse over a symbol you can see the summary value in mg/dL.
Later in the review, I show an example of the
Modal Day view
for the data. This is valuable for doctors and, with some help, patients.
I believe that software like this is unusable for the average patient. It doesn't provide information that they can readily act on. At the end of this review I've outlined some areas for improvement.
The rest of this article is a screen by screen description of what I found in the Dexcom software.
Dexcom Software Details
When I loaded the CD that the software arrived on, it immediately started installing. I was given no installation choices about where to put the software. This was the only screen that I saw.
The whole feeling I got during thw install was the lack of control I was given. Notice how the screen above only has a Cancel button? And there's no option to indicate where to install the software.
The next screen below warned me to remove any attached Dexcom receivers. Now this is written all over the box that contains the software and cable, but I understand the need to be cautious.
So after pressing OK, the next screen tells me to connect the Dexcom receiver using the supplied cable.
I connect the cable to a USB port on my computer and to the Dexcom receiver. After pressing OK, I get the obligatory legalese screen.
Now I'm ready to download data from my Dexcom receiver....but the software isn't.
First I've got to fill in some details to get the download going. On the screen below, I click the New button (picture is after I filled in my details).
Then I fill out this form. You could leave it blank. But then if you exported the data, it wouldn't have your name. I added the minimal amount of information.
Then I press the Start button to get the transfer going. I had data from March 23rd to April 10th, about 18 days worth. While the data is transferring I see the following screen. It takes about four minutes to transfer all the data across.
After that I can finally see the data, up to seven days at a time. Apart from the Glucose Trend view (shown at the start of my review), there is also a Modal Day view that shows up to seven days worth of data superimposed over a single 24-hour time period.
I think this is the most valuable aspect of the Dexcom software. You can select for example three days worth of data and then use the arrows to see successive days. That gives me some idea of the trends.
Minor Points
The Dexcom software was almost hidden on my PC. I had to use a special tool to find it buried under the following area:
C:\Documents and Settings\Bernard Farrell\Local Settings\Apps\2.0
After a good deal of investigation, I could not figure out which file in this area is holding the data itself. So for a technical person like me, I couldn't figure out how to extract my own data from their software so I could look at it in more detail.
Areas for Improvement
I could write several pages here. Let me just make a few points.
First. Make two versions of the software. One for patients and one for doctors. An individual doesn't need to track patients. This same criticism is true for software from OneTouch and Minimed. I think they're using the same group of consultants!
Second. Let us get at our data. Better yet, make it available in a standard format. That way we can build software to combine this with data about food, insulin, and other useful information.
Finally. Add some basic statistics. How about the average (mean) blood glucose value for the displayed time period? Or the percentage of time between a range of values. This could really help.
Other stuff. I'd like to compare what happens over different time periods. Show me the trend for a 14-day period. Give me the modal view for a selected set of weekends. Allow me to mark a range of readings with additional data to indicate sickness, menses, etc.
Your Assignment
Have you any experience with diabetes-related software? Are there things that you like or don't like? How about providing some comments that might help in the development of the next version of this software.
Have you used the Minimed software for this CGM? How about posting a review somewhere for that.
Labels: CGM, Dexcom, review, software
