Wednesday, January 12, 2011

A Few Requests (Short of a Cure)

"I'm melting!"
When I was in college, two days before my first marathon, I capsized while sailing in the Charles River.  I blame my "date" who told me he sailed every summer growing up.  That seemed likely until he pulled the sail in tight, and didn't then release it when we were jibing in a strong wind.  End of story.  The boat house folks sent out a canoe for the sailboat but nothing for us.  After swimming to shore, I pulled out my pump, securely water-proofed in a few ziplocs, held it up and watched the water drain onto the ground. Oh no.  For my first marathon, I was back on injections for the first time in more than a year.  After then, I would have dreams where I was swimming or otherwise submersed in water and I would be holding the pump above the water, frantic that it might get wet. I felt like one of the witches in Oz.  Once I finally was able to switch to a waterproof pump, those dreams went away.  The development of water-proof insulin pumps is one of the advances that has made a significant, positive impact on my life--not just in getting rid of my pump-drowning dreams, but allowing me to stay connected during years of swimming and competing in triathlon.  And I'm no longer afraid of the rain.

But wait.  I have more requests.  Short of a cure, here are a few things on my diabetes wish list:

1) Blood insulin meter.  Let's say it's been 2 hours since my injection and I'm about to go exercise.  Wouldn't it be handy to just be able to know how much insulin is really still active?  Or how about when my blood sugar is 400 and I take a huge bolus to correct and two hours later I'm still at 400.  What happened to all that insulin?  Is it just hanging out, waiting to crush me later?  How could I know? Bolus up, maybe do a super bolus, and hope for the best!  Or be conservative and watch the BG hover up there for hours.  I imagine the metabolism of insulin varies a lot depending on many factors but no one really seems to discuss this much, probably because we (as patients) have no way to measure it.  And what about being able to pinpoint that the infusion site is bad vs I am coming down with a cold or maybe that day off from exercise is affecting me more than I expected.  So many variables! This could help significantly to cut down on the guesswork.

2) Stable glucagon in a pen delivery device.  One of those glucagon kits is $100 and can't really be used more than once according to enclosed instructions.  Sure it's easy to eat food and doesn't require an injection.  But seriously, I don't care about injections.  Those pen injectors are pretty slick.  What I want is good glucose control and to not have to eat 500 calories in a day to treat a low.  I don't want to go drink some soda after I overestimated the carbs in a filling meal.  I just don't want to HAVE to eat.  Especially after I just brushed my teeth for the 3rd time. Maybe it sounds petty to some people but I just wish I didn't have to make food and carbs such a focus of my life.  Let me introduce a little distance between food as nourishment and food as the thing that makes all my crappy feelings (i.e., hypoglycemia) go away.

3) Data integration with non-diabetes devices. FREE THE DATA!  Free it! Do it! Do it now!! Hey diabetes technology people!  Hey FDA! Design your devices so they are safe but let us capture the data in a way that we can use how we want!  I am not a moron!  This is perhaps the thing that drives me the most nuts.  There is absolutely no reason technology-wise that the continuous glucose meter data, for example, should be restricted from streaming to my iPhone or workout device. Arghhh! I have to stop writing about it because it is so incredibly frustrating.  I know there is a lot of work on this but there shouldn't have to be any.  Free the data and people will design apps.  FDA are you listening?!

Okay, those three things are probably enough for now.  If the list is too daunting, let's just get that cure all sorted out. Thanks!

6 comments:

Becca said...

Anne, yes, that would have been a good app like 5 years ago! I'm kind of shocked that it hasn't happened yet.

Free the Data

Save Ferris

Cary said...

Free the data! All I need is a simple data file and can figure out what to do with it myself (create models and calculate charts).

Interesting thoughts on an IOB tester. No idea how something like that would work technically, but I would buy it.

jpnairn said...

I am totally with you on "FREE THE DATA!" CGMs, pumps, meters, etc.
The FDA had nothing to say about paper and pencil log books; they shouldn't have to be involved in managing the same kinds of data electronically.
And the manufacturers of all of this equipment should be ashamed of themselves if they don't publish their data formats and specs for downloading. Their profits aren't as important as our health.
An idea related to this and to your idea about blood insulin meters:
IOB is a good bit of data, but what you are talking about is "active insulin" where "active" means circulating in the bloodstream.
Another thing would be "insulin profile." This data is already there, just not visible to us, as far as I know.
We should be able to get a graph, just like our CGMs show of the past blood sugars, of when the insulin we have bolused and gotten via basal will be in our blood. This would be a graph of the next few hours, based on what we've done so far. The pumps are already capable of doing these calculations, they just don't show them to us.

Nathan said...

Anne, we talked over a year ago about working on a project that would incorporate heart rate, BG, and distance into one interface such as a watch where the data gathered then could be sent to a graph to compare BG vs. HR, BG vs. distance, etc. The pump manufacturers have not really helped much in this whole process keeping everything proprietary. However, after a little research, the frequency that the CGM transmits (at least Medtronic’s) is in an unlicensed bandwidth, 812MHz. The only issue would be to intercept the signal when it is transmitted. Once you intercept the signal or the BG level, sending the data to something like an Excel spreadsheet to graph the data would be the easy part.
Texas Instruments recently released a wireless development tool that is a sports watch. With the right knowhow, this watch can be programmed to do about anything a diabetic athlete who wants to know what their blood sugar is doing at any particular while they are training. http://focus.ti.com/graphics/tool/ez430-chronos_800.jpg, http://focus.ti.com/docs/toolsw/folders/print/ez430-chronos.htm

Nathan said...

Anne, we talked over a year ago about working on a project that would incorporate heart rate, BG, and distance into one interface such as a watch where the data gathered then could be sent to a graph to compare BG vs. HR, BG vs. distance, etc. The pump manufacturers have not really helped much in this whole process keeping everything proprietary. However, after a little research, the frequency that the CGM transmits (at least Medtronic’s) is in an unlicensed bandwidth, 812MHz. The only issue would be to intercept the signal when it is transmitted. Once you intercept the signal or the BG level, sending the data to something like an Excel spreadsheet to graph the data would be the easy part.
Texas Instruments recently released a wireless development tool that is a sports watch. With the right knowhow, this watch can be programmed to do about anything a diabetic athlete who wants to know what their blood sugar is doing at any particular while they are training. http://focus.ti.com/graphics/tool/ez430-chronos_800.jpg, http://focus.ti.com/docs/toolsw/folders/print/ez430-chronos.htm

Roberta Morgan said...

Hi Anne,
I have a friend who is currently in Europe that works closely with Powercoach technology. He has approached him about including cgm readings with the other technology offered by powercoach, and... woo hoo... he is highly interested!! He is meeting with Powercoach again in the next few days. I love your blog...
morgan.roberta@ymail.com