Thursday, May 31, 2012

This. Is. Awesome.

And it begins! Yesterday I was hooked up for the first time to the Artificial Pancreas cell phone platform, but up until this morning it was being used the same way my regular omnipod insulin pump would have been. Most of yesterday was working out the technical aspects of the various components. The initial configuration involved 2 fanny packs, one camera bag and two receivers for the CGMs, and quite a bit of what I'll refer to as tinkering to get everything in place and communicating well with each of the other systems.  To tell the truth, I felt like Tim The Tool Man Taylor with my belt of fanny packs and it was kind of awesome. Despite going low at around midnight, my sugars stayed pretty stable throughout the night even though the sensors seemed a little sensitive and needed to be calibrated a couple of times. But hey, if all that happens overnight this time is a finger stick every few hours instead of an IV blood draw every 30 minutes, I'm not complaining one bit! 

This morning after taking what I would consider a world record short shower (just over 4 minutes!) to prevent losing my connections with the systems, we went into closed loop mode and let the Artificial Pancreas do its thing. We had a minor road bump with the breakfast bolus that set off a hypoglycemia alarm, but a quick system reset put everything back in check and the rest of the day so far has been smooth sailing. 

As a general rule I try not to bore anyone by listing the things I've done today, but I feel like this is probably an exception so here we go: I ate lunch around noon which was macaroni and cheese, and then I'd like to say I did something grand with my day in the hotel, but the reality is that I decided to take a nap. So for about an hour and a half I slept and I didn't have to worry about my blood sugars because the Artificial Pancreas was doing exactly what it was supposed to do.  My sugar went up a little, it increased my basal a little, and my sugar stabilized. My sugar began to drop a little and it decreased my basal a little, and it stabilized again. I've been up for a few hours now and still feeling great. To say that this is the most incredible thing I've ever seen is a very serious understatement. THIS IS AWESOME! And I didn't have to tell it to do a thing! I didn't have to decide what percentage to decrease my basal rate by or for how long, I didn't have to decide if a correction bolus was necessary and if so was the bolus going to be enough.  It made those decisions for me and did exactly what I would have tried my best to do. Today it's taken the weight of being diabetic off of my shoulders, and it's not even dinner time yet! 

Tuesday, May 29, 2012

Let's do this

One more day! Tomorrow Zach and I head back to Charlottesville. I have the incredible opportunity to be a part of history. I still can't really believe how fortunate I am to have the opportunity to participate in the very first set of Artificial Pancreas Project outpatient clinical trials in the United States. It's almost like a dream that I'm afraid to wake up from and find out that the  Artificial Pancreas hasn't been developed, that we aren't this close to taking some of the daily weight off of managing diabetes, and that there are no trials for me to participate in. But every morning for the past few weeks, I've woken up to find that the dream is a reality.  I sincerely hope that everyone who has worked so hard to make the AP what it is and to get it to where it is today knows how grateful myself and the millions of other people who's lives are touched by Type 1 Diabetes everyday truly are. 

The day before I went for my inpatient trials, I was feeling very much the same, but at the same time quite differently than I am now. I was and still am incredibly grateful for the opportunity, ridiculously excited, and practically counting the hours until the trials start. But this time is different because all of the fears I had of the hospital and the IVs in my arms and not knowing what the to expect from the Artificial Pancreas itself are all gone. This time it is pure and simple excitement. I've seen that this technology is more than capable of doing what it is meant to do, I don't need to be in a hospital bed, and there are no IV blood draws (I still don't think anyone could actually enjoy an IV). I've said it before and I will say it again: This is REAL LIFE. Now before I get ahead of myself I want to offer the reminder that this is just the very first set of outpatient trials here in the US, so I can't leave the hotel but everything moves in stages and with this being just the beginning, it can only get better from here.  

Right now I have the 2 CGM sensors that were put in yesterday and my normal omnipod. Tomorrow at this time I'll be getting ready for bed with my AP cell phone, and knowing that pretty much means I'm too excited to sleep tonight. Sort of in the same way that it's hard to sleep when you're a kid the night before leaving for a really awesome yearly family vacation to an amusement park (Mom, Dad...Hershey Park?).  I would have posted earlier today but honestly, every time I tried writing I just started crying again (that's pretty much what I do these days) but its always happy tears because I know I won't have to keep doing what I do forever. Just a little longer.  I'll do my best to sleep tonight, but knowing what's just around the corner tomorrow makes that pretty much impossible.

Monday, May 28, 2012

Round 2

Nothing is ever easy. But I don't need easy, I just need possible. The past 24 hours have been an adventure, and the actual trial doesn't even begin until Wednesday! Let's back up to yesterday morning when my tire pressure light came on alerting me to the fact that I had a tire low on air (not noticeably flat, just low). Zach found the tire, filled it with air and it was completely fine the entire morning, but at about 8:45pm last night when we went to check on the tire to make sure it was holding up we found a gigantic screw or bolt or some piece of hardware that was the culprit. Having scheduled my continuous glucose sensor placement for 10:30am this morning, naturally when I realized that the car is not going to make it to Charlottesville in its condition at almost 9pm on a Sunday night before a federal holiday, I panicked.  In retrospect this was nothing to be panicked about, I think I was just so worried that I was going to miss this opportunity and these trials are SO important to me, that my gut reaction was just to panic. Fortunately for me, I have my own knight in shining armor who holds me together or picks up the pieces when things like this happen, and without fail Zach was there for me just like always to fix the situation. He spent about an hour on the phone calling literally every tire place he could find in the DC/MD/VA area finding someone to either patch or replace the tire, and by 10:30am this morning we had a fixed tire and were on our way to Charlottesville a mere 2.5 hrs behind schedule! Easy? No. Possible? Always. 

The culprit.

This time Zach was able to come with me for the CGM insertions, and having done this one time before, I sort of knew what to expect which made it a little less scary, but not entirely anxiety free. For the trials, I'm required to have two continuous glucose monitor sensors placed under my skin to check my blood sugar every few minutes. One is used for the artificial pancreas, the other is a backup in case the first fails because they require a 2 hour warm up period, and if you know diabetes, 2 hours without proper glucose control has the potential to put you in deep trouble.  

When we got to Charlottesville, Zach and I met with Daniel, my main contact for this trial. After going over exactly what would happen beginning Wednesday at the actual trial, it was time to insert the CGMs under my skin on my abdomen. For those of you who know me, you might already know this but it took me 9 years of injections to warm up to the idea of an insulin pump because I couldn't come to terms with having something under my skin all the time.  That being said, when Daniel asked me if I wanted to try putting one of the sensors in myself what went through my head was "No no no no never no no." But what came out of my mouth was more like "Uhhhh ummmm hmmmm uhhhh ok I can try". So we went over the directions, and with Zach helping read me the instructions, Daniel helping click the pieces into place, I inserted a CGM in my own abdomen! In about 5 minutes I was now able to conquer what had taken me 9 years to do previously. I was pretty darn proud of myself, but it was really a team effort. In the interest of saving time I asked Daniel to handle the second one for me, and now I've got my 2 sensors, ready to go for Wednesday. 

Look I did it!

On the drive home today I cried. Having these tiny little things under my skin means that it's really starting. That I'm really going to be one of the very first 5 people in the United States to use the Artificial Pancreas on the cell phone platform (I'm the 4th person, to be exact!)  and that I get to witness first hand how awesome the Artificial Pancreas is in an outpatient setting, in a real world setting.  Today was a very long day. Between the driving in Memorial Day traffic, the tire incident, and the nerves about inserting the sensor, I'm ready for an early bedtime tonight. But it was worth it a hundred times over and I would gladly do it all again. Wednesday here I come!

Thursday, May 24, 2012

Let the countdown begin

6 days from today I check into the hotel in Charlottesville and begin my outpatient trials of the Artificial Pancreas. It's pretty much all I've been thinking about for the past few days, and it's kind of hard to believe that I'm actually going to be in this trial. I get a break from my diabetes. A REAL break. Doing the inpatient trials (see earlier posts below) was really incredible and even though I was tethered to a computer by several cords, it still felt like freedom. Honestly, I don't even really remember what life was like before I was diagnosed. For 17 years this has been a part of my life and that's just how it's been. But to now know that there exists a piece of technology that can change all of that is just so awesome. And this time it's being used outside of the hospital! I don't know if there are people out there who enjoy or even just don't mind being in a hospital, but I am most certainly not one of those people. So when I found out that the outpatient trial would be held at a hotel I'm sure you can guess how excited I was.

I check in late in the afternoon on Wednesday, May 30th and check out around lunchtime on Friday, June 1st. Again I'm packing way more stuff than I need to be bringing, but it's different this time because I have free reign inside the hotel. I won't need to push a button and call for a tech when I want to get up and brush my teeth, I won't need to spend the day in bed watching tv (not that I necessarily minded that part...), and I won't be surrounded by hospital equipment. I'm not allowed to leave the hotel for the duration of the trial, but I'm more than OK with that. Even inside the walls of a hotel this will still be the Artificial Pancreas doing its thing in REAL LIFE. In 6 days.

Wednesday, May 16, 2012

Good things come to those who wait

Living in this day and age, we are not strangers to the term "technical difficulties" and as with most things in life, the trials are no exception. That being said, I had to change my dates for the outpatient trial and will now check in at the hotel May 30th. This is something that I would have liked to have posted sooner but I had a bit of a family emergency and in my book, nothing is more important than family so my blog had to wait. In a way, needing to delay the outpatient trial has been fortunate because now I have the ability to offer what support I can to the rest of my family who has always been there to support me. And things are really starting to look up, so aside from the fact that I'm still the one running the show for my pancreas for the next couple of weeks and not the cell phone, I can't complain. And even though my outpatient trial has been pushed back a little, they have still begun! I invite you all to watch this short video of the very first outpatient Artificial Pancreas trials in the US.

Go ahead and try to not be excited. I dare you. It's impossible knowing that this technology is out there! This is monumental and I can't wait to be a part of it. 

On an unrelated note, this past weekend I officially became an AMERICAN UNIVERSITY ALUMNI!!! I wasn't sure I would ever make it but I worked my tail off and I've got to say, it feels good.

 Dad was in charge of the cake. Pure perfection.