It begins again

It has been a long time since I have written, and it has been my experience life gets either more complex or more simple as we age. For me, it has come in waves. Just as I think things could not get more hectic, life settles into a soothing flow. And once I've enjoyed that for a while something happens that throws me for a loop, whether good or bad, and the cycle continues. But that's what makes life so beautiful and why we can appreciate all of the good in it. That being said, today I have begun a new journey in my life that will help to positively impact not only my life but the lives of millions. (Yes this sounds incredibly pompous but bear with me)

I once again have the extreme honor of working with the Center for Diabetes Technology at UVA to participate in a phase 3 outpatient clinical study of the artificial pancreas, which is now called the Diabetes Assistant (DiAs), in which I get to take the DiAs home with me!!! If you have been following the press regarding diabetes technology or have been following my blog, you know that this is a HUGE step forward towards improving the lives of type 1 diabetics and towards finding a cure.

The progression of this trial is going to come in waves before I actually get to use the DiAs for 24 hrs a day, and today marks the official beginning, as with the other trials I have participated in.

I went for my health screening with a physical examination and bloodwork, and also signed my paperwork to be allowed to be a part of this trial. I got my dexcom CGM for the trial, and had a ton of safety protocol training to make sure that I stay healthy during the trials.  So I will be wearing the trial CGM for 3 weeks to gear up for the next phase which will have me using a new insulin pump in preparation for using the DiAs at home (!!!!!!).

I dont think that the reality of how immense what I am doing had set in fully until this afternoon.  I've been wide eyed since I got the email this past Tuesday asking if I was able to be a part of this trial,  and I slept maybe a total of 2 hours last night. If you know me, you know that I dont sleep before anything exciting happens in my life. Even at almost 30 years old I can barely sleep on Christmas eve, it's just what I do. So while I knew that this was exciting enough to warrant a sleepless night, I think that I finally realized the magnitude of this trial when I walked into a room filled with what can best be described as Christmas morning for diabetics. CGMs, glucose meters, tabs, a blood keytone meter, an insulin pump, I mean the display was intense and somehow I've managed to keep myself together but I know the tears are coming. If I make it through to tomorrow without an episode of uncontrolled happy sobbing it will be a small miracle. But I've worked hard to stay healthy for the past 20 years since my diagnosis and not only me but all the people who have helped me get here  have earned this bit of freedom.

Once again I don't have words to clearly express how immensely excited and grateful I am to UVA, Stacey, and the rest of the team at the Center for Diabetes Technology to be doing this, and I know that the future is going to be so incredible. Not just because I have the chance to use the DiAs but because this all means that the DiAs is on the horizon for all type 1 diabetics. The hope that I see for the future is mind blowing and I can only wish that others are able to feel that hope too. The future is here and it's coming faster than anyone could have ever wished for. Get ready world, we are about to diabeat this!!!

Happy 18th to my T1D!

Two days ago, my type one diabetes officially became an adult. 18 years ago I was diagnosed September 7, 1994. Nine days before my 10th birthday. It's probably one of the few days of my childhood that I can remember so clearly and vividly, and that both of my parents remember exactly the same way. I was at my pediatrician for my yearly physical, and we had gone a few days early because my parents didn't want me to miss any of my first week of 5th grade. I remember that I was thirsty ALL the time, drinking anything I could get my hands on, and I remember that I had to pee every 5 minutes, but I don't ever remember feeling as sick as I must have been.

When we got to the doctors office they did the usual tests like a urine culture, and when that showed a high glucose level they checked my blood sugar. All I know is that it was somewhere over 800. I can't give an exact number because the equipment in the office wasn't able to read anything over 800, and if you know diabetes then you know that's bad news. At almost 10 years old I weighed only 42 lbs and was severely malnourished. My parents knew something was wrong, but couldn't pinpoint what and finally knowing what the problem was meant that there could be a solution and that my downward health spiral could cease. I remember sitting in the office of my pediatrician, and I remember my mom ripping the lollipop out of my mouth when he said the words "your daughter has diabetes". From that moment until when we got home is cloudy. We had an appointment with an endocrinologist the next morning and I was given a list of foods I could and couldn't eat that night. Honestly I can't remember what was on the list, but I know that I was able to eat all the broccoli with melted cheddar that I wanted. Cheese has and always will be one of my favorite foods so at that point I was just happy to be eating all the cheese I wanted, blissfully unaware of what happens next when someone is diagnosed with Type 1.

The next few days are a blur, I remember asking my endo when I would have to start getting shots, thinking it would be in a week or so, and I remember him saying "right now" which was a pretty big shock. But my parents stepped up and learned to do the injections on me right then and there. Mom, Dad, I won't ever forget what you both did for me starting that day.

Some people experience a traumatic event in their lives and it gets blacked out or it becomes a blur. For me the most traumatic event was also the most vivid and the most inspiring. My doctors have told me that had I waited the nine days until my birthday to have my physical that I wouldn't be alive, and to this day I still can't believe how incredibly lucky I am that I survived. I firmly believe that everything happens for a reason and I know that I was given Type 1 Diabetes because not only am I strong enough to handle it, but I'm strong enough to fight for a cure.

18 years after my diagnosis I am the healthiest I have ever been. I'm not going to pretend that it's easy, and I'm not going to pretend that I'm perfect. I have the occasional 300+ blood sugar as well as the 50- but that comes with the territory and while I do the best I can, I'm only human.

If it wasn't for the dedication, support, and love from my family and friends all these years I wouldn't have made it to where I am. So thank you to all of you, I don't know if I can ever have words to express what you all mean to me, but I am forever grateful for everything you have done and continue to do.

Through my involvement with the clinical trials of the Artificial Pancreas Project, I have every bit of confidence in the world that what I have to do on a daily basis to manage my blood sugars will soon be a thing of the past. In the meantime, I am just as full of hope as ever.

There is no place like home

I know that it's been a while since my last blog post, and I do apologize for that, but I have a very good explanation. A couple of days after I completed the incredible, inspiring, and just plain awesome outpatient Artificial Pancreas Project clinical trial at UVA I headed out on my first airplane trip ever to vacation with my fiancé Zach. Now the truth is, the reason the trip was even a possibility was because Zach was presenting at an important neuroscience conference in Palm Springs, and we have a lot of family on the west coast that we love dearly and very rarely get to see so we took a couple of extra days to spend some time with our loved ones. I've said it before and I'll say it again, family comes first. And boy am I grateful for the family that I have.

Before I get into that, I want to talk a little bit about traveling with diabetes, specifically an omnipod wireless insulin pump. I've been hearing horror stories left and right about how TSA has been ruining pumps, giving ridiculously invasive pat downs, and just generally being rude to people with Type 1 Diabetes and insulin pumps. But I can say with 100% confidence that traveling with diabetes doesn't have to be difficult as long as you keep a smile on your face and realize that the airports only do what they do in the interest of the safety of all their passengers. All of my equipment and supplies ran through the carry on X-ray with no problems. I traveled through a few different airports, from the major ones such as Dulles International and LAX to the tiny ones such as Palm Springs and Tucson. And with the exception of Tucson which seemed to only have metal detectors, I went through the full body scanner every time and upon telling them I had a wireless insulin pump, all I had to do was touch the omnipod with both hands, have my hands swabbed with a dry circle of paper, that swab was then sent through a computer and after about 30 seconds total I was cleared and on my way to my flight. I suppose my point is, of you're diabetic and wear an insulin pump, just remember that you are in fact a little bit different from the person next to you (but really who isn't?) and if you just smile, stay honest, and try to relax traveling can be easy for someone with T1D!

That being said, vacation clearly agrees with me. I had my basal rate practically shut off at least half of the time I was on the west coast, and if I did the full recommended amount of insulin for the carbs I was eating, I ended up sucking down glucose tabs like it was my job. As if the benefits of the Artificial Pancreas weren't clear enough already this made it painfully obvious to not only myself but to the family around me that doesn't normally get to see my day to day battle with T1D. One night at dinner we were all discussing my recent opportunity to participate in the Artificial Pancreas outpatient trials, and I had said that I can't remember a time that all of this day to day managing of diabetes wasn't just how life was, and my amazing grandmother who is bravely battling breast cancer said something that was so simply insightful that it will stick with me forever. She said "It's a new normal." And she was completely right. Something so unexpected and so life changing can come into your world and in the blink of an eye and suddenly it's just how your life is. I have no family history of Type 1, and to make a long story short, I had a blood virus that triggered an autoimmune reaction that caused my diabetes. Or at least that's the best explanation my doctors have been able to find. So was it bad luck or good luck? I would never wish what I go through on a daily basis on anyone, but I do firmly believe that it is what has made me who I am. The strong, prepared (if not overly so), dedicated, appreciative and grateful for every moment on this planet girl that I am today wouldn't exist if I wasn't presented with this challenge in life.

It only gets better

For me to say that the Artificial Pancreas will be a massive game changer for Type 1 diabetics would not be giving it enough credit. Just to be clear, the multi-fanny pack belt system is not a planned part of the finished product, and most of the components of that were running as a backup so there could be a flawless transition if something went wrong. So the end goal is in fact for the user to just carry the cell phone, but when Zach asked me if I would still want the Artificial Pancreas even if it meant I would have to carry a pouch of equipment all the time, my answer was without a doubt YES. I would have tried my best but the AP did a better job of controlling my sugars and keeping them between 100 and 120, and I didn't have to worry if I was making the right decisions. The last night that I was in the hotel, my sugar started dropping before bed. I can usually feel it when it starts to drop quickly and I definitely felt it so both Zach and I were convinced that I was going to need a juice box, but we held out because I've seen what the AP is capable of and wanted to see it do it's thing again. So I went to sleep. I knew if it started to drop too low an alarm would sound, so I thought I might as well get some shut eye in the meantime. 8 hours of uninterrupted sleep later, I woke up and had to ask if I went low and just didn't remember, because it was just that incredible. The AP knew that my sugar was dropping, and started to cut off my basal rate soon enough that I only dipped a little below 100 and stayed in normal range all night! The AP delivers insulin a little differently than the standard insulin pump. To deliver the basal insulin it gives a very small bolus every 5 minutes, and it adjusts the size and frequency of that very small bolus based on what it senses your blood sugar to be and how it is trending. With such small basal boluses it's possible for the AP to regulate the blood sugar in a human body before it becomes problematic, and if you have T1D you know that there are a million different reasons and variables that could cause your blood sugar levels to be problematic.

I returned home from Charlottesville Friday afternoon and in the two nights that I've been home, my sugar has gone low each night (last night it was all the way down to 41) despite going to bed with sugar levels that had been very stable between 140 and 150. I already knew what a difference the Artificial Pancreas could make, I had the amazing opportunity to experience it first hand over the course of both the inpatient and outpatient trials. But to experience both extremes of the spectrum in back to back nights where my sugar was perfect one night and then horribly low the next really hit home with just how important the Artificial Pancreas is. I don't know if I will ever be able to properly express how grateful I am for everyone who has had a hand in the development of the Artificial Pancreas, and everyone who has made my trial experiences so incredible. I can only hope that the data my trials provide helps to move the AP to market, because the sooner this is available, the sooner lives will change. I've said it before and I'll say it again, I have more hope than ever knowing that I won't have to do this all forever, just a little bit longer.

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! 

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.

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!