Wednesday, April 14, 2010

The double edged sword and our latest CGM adventure

It's been a while. The last 2 weeks have been quite hectic which explains my blog absence. The first week was due to non-Type 1 Game events that got me quite worked up. I apologize if these frustrations came out here. Sorry Alice. The blog is a medium to blow off steam, I just don't want anyone to feel like they're in the line of fire during my outbreaks. Last week was a longish battle with a cold virus. I'm back this week, and feel the need to post, so here we go...

All Type 1 gamers need heros. They need players that they can look up to. They need role models who are thriving despite and even because of their Diabetes. They need someone that makes them feel less alone. They need someone that gives them confidence to believe that they can do ANYTHING that they set their mind to if they're willing to do the necessary Type 1 Game work that goes along with this success. They need individuals like Chris Jarvis, Sebastien Sassville, Jonny White, Phil Southerland (and the other Type 1's on the Team Type 1 professional cycling team), Kris Freeman, Gary Hall, John Chick, Adam Morrison, Chris Dudley, Nicole Johnson, Nick Jonas and George canyon.

Each of the gamers in this list give other Type 1 gamers hope. I mean, they've accomplished so much in their quest for excellence in what they do. They are world class athletes, adventurers and entertainers. Many, many non-gamers have attempted to get as far without as much success. These individuals have gotten there despite (or maybe because of?) their Type 1 Diabetes. How inspiring ! So, what's the problem? Well, as far as being role models, they're really doing too good of a job. In a way, they're making it look too easy. Google any one of them and look at pics. They don't look one bit like they have a serious life-threatening chronic disease. In fact they look amazing! They appear to be healthier than the huge majority of North Americans. Most "normal" people like me would do just about anything to look and be more like them. They are true winners in every sense. And yet, they'd die in a matter of hours without insulin.

So, what's my point? The success stories are worth sharing and like I said will provide much needed inspiration to the gamers facing the same challenges, but we must not forget the seriousness of the disease and it's implications. I find that too often this is overlooked. Most non gamers believe that Diabetes is always reversible and seeing and hearing about these Type 1 game heros really reinforces this misconception because no one sees what they go through to achieve their goals and thrive the way that they do. The silent Type 1 game struggles and suffering side needs to be shared because most people have no clue what it's like to play this game. And until more people realize what it's really, really like, true awareness is not really happening and we're not accelerating the much needed cure as much as we could. Don't be shy, tell someone your story... Share what this game puts you through... Because without this, we're missing the Type 1 awareness boat.

Our 1 year Continuous Glusose Monitoring (CGM) anniversary is coming up in about a month. The sensors seem to be getting more and more precise. This last batch seems to have about a 1 to 2 mmol/Ls (18 to 36 mg/dl) difference with the meter reading. It does however seem to have a harder time with quickly changing values as well as higher highs and lower lows.

When we first started using the CGM, we set the low alarm to warn us if Adele went low. We weren't using the high alarm at first to avoid adding to the too many alarms that seemed to be going off way too often. Then last month, I set the high alarm to 15.0 (270), high enough so that it should only go off in extreme cases. Last night, when my wife woke up to check Adele's blood sugar at 1:30 am, it was at 14.0 (too high), she corrected with 0.7 units of insulin. We went back to sleep. Then at 4:45 am, we were awoken by Adele's pump alarm. It had been screaming for a while now and the whole pump was vibrating by the time that I got to it. Adele was sleeping. I was surprised when I glanced down to see what the problem was. Her CGM was saying that her blood sugar was 16.0 (288) trending upward. I tested with a finger prick and her meter. The result was 15.7 (283). That didn't make any sense. The correction at 1:30 am should have brought her down. She didn't eat anything. Either she is coming down with something or there is a problem with her site. I really hate changing her site on a school morning, even less in the middle of the night! Then, in my half-asleep stupor, I noticed that something was different. Her pump was not wireless, so why wasn't the tubing attached to it anymore? Crap, the tubing broke right where it enters the insulin cartridge. I had no idea how long it had been this way, but it did explain the high (and still rising) blood sugar. She was not getting any insulin at all. I filled and installed a new insulin cartridge and tube and reconnected Adele to her lifeline. I then gave her 1.2 units of insulin to hopefully bring her sugar down before wake time. She woke up at 10 (180), still high, but much better than the 30ish (540ish) number we would have likely seen had the CGM not caught it. Thank you CGM...


alix said...

Great post Mike.
Sometimes we just need to blow off steam. Unless you live the life we do, you will never understand the day to day joys and frustrations. I appreciate all the T1 role models you tell us about.

Thanks also for the update son the CGM. Hopefully technology will get even more precise, but it sounds like it is working well for you!!!!

Keep up the great posts

Meri said...

My biggest pet peeve about our pump is when the tubing breaks off right at the reservior just as you said. Worse, is when it cracks there and you don't notice until they are sky high. Luckily it doesn't happen very often..sometimes I think we just get a bad batch of sets.

I love the CGM! I'm planning on putting it on a new kid today. My 8 year old is eager to give it a shot. How awesome is that that the CGM woke you up! If it hadn't your morning would have looked MUCH different!

Mike LeBlanc said...

I remember reading that the same thing happened to you Meri. This was the first time for us.

And yes, our morning (whole day) would have been soooo much worse had it not been for the CGM !

Hallie Addington said...

I so agree with you on the awareness factor. I have a quote about it that I posted once and I need to go digging in the archives and post it again beause it's just been on my mind a lot lately.

Congrats on the 1 year cgm anniversary! Glad you got the problem worked out last night. I am eagerly awaiting a cgm trail..... not so patiently awaiting it! I love hearing cgm successes!

Unknown said...

Mike: Great post! I think you're completely correct on the awareness and hero aspect, but how some of those individuals make it seem "too easy" as we don't see the real D-Life stories behind their successes. I do think Nick Jonas does an outstanding job, for one, in showing that other side. For that, I turn to more down to earth heroes such as Kerri Sparling (SixUntilMe) and George Simmons (NinjaBetic), who show me both sides - their regular life successes and how diabetes is a part of it all. It all provides me with inspiration, and I hope that it does the same for those younger generations who are newer to the whole Type 1 Game.