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!