I have to apologize this post is a couple months overdue. My husband, daughter, and I moved to a new house in February and we've been really busy ever since!
Before we moved, though, I finished up Phase 2 of the Artificial Pancreas Project at the University of Virginia. The research coordinator for Phase 2 said they really wanted my data, because they needed to measure insulin resistance during the time of a woman's menstrual cycle, and I was one of the few volunteers who had a cycle. (Some volunteers were men and others were women who had been through menopause.)
Phase 2 of the study consisted of two separate visits/admissions to UVA. The first was when I had just started my cycle. I called the study coordinator that morning to let her know, and she made some calls to make sure the endo overseeing the study would be available, then told me to come down at 4pm that day. I was late, due to traffic, and that morning, my husband and I had closed on our new house! So it was a busy day. But they still admitted me and immediately started an IV. But this was not a normal IV- it was a line they thread in your vein to allow them to take blood straight from your vein whenever they want. I don't know what that's called, but it's not your standard IV! Anyway, it's tricky to get it threaded just right, and they had to stick me several times, which was not fun! Finally, they got one and started drawing blood, I think every hour that evening (if I remember correctly). And by the way, they didn't use a meter like we use for measuring your glucose. They have a lab machine in the hospital room where you're staying that they put the blood in, so it's a real, true bg measurement. I tested it against my meter (a OneTouch) at one point and found my meter was 10 mg/dL off! So now I understand why people complain about meter accuracy!
Anyway, after my admission, I was put into a room with a roommate who had also had T1 for about 25 years (or thereabouts- I can't quite remember). She was very sweet and we got to room together for the second admission, too. I had brought my laptop with me and was able to do some work the evening I was admitted. I also spoke with the endo overseeing the study, who I really liked. For dinner that evening, they brought me a meal I had previously selected- grilled salmon, brocolli, and rice, plus two shortbread cookies. They also gave me a sheet of paper with meticulously counted carbs listed. I told the endo I wasn't going to eat the rice and might eat one of the two cookies, but that would be how I normally dealt with that type of meal at home. She said that was fine and we calculated a dose for it, which she recorded. I delivered all doses through my pump (Minimed 723). I was also wearing my Dexcom, but they didn't use it for any treatment or decisions. In fact, they asked me to turn off the alarms for the Dexcom, because they would be taking my blood frequently and the whole purpose of Phase 2 was to put my bg on a roller coaster and measure how long it would take to recover from a low, and how long it would take to come down from a high. So having the Dexcom yelling at us wouldn't be helpful. The endo also explained that it would be preferable if they didn't tell me what my bg was unless I really needed to know (such as at pre-meal times). That scared me a little!
At 11pm, I was on the brink of falling asleep when a new nurse arrived and said she needed to have two IVs in my arms- not just one. Ugh! She shoved one in my forearm (not elbow and not hand, but in between) and it hurt pretty badly. It was a larger needle and it was in a painful spot. She finally pulled the curtain back and left the room, and I silently cried! LOL I was telling myself, "it's worth it for science! it's worth it for science!" but truly, I was regretting ever participating at that point. I knew I wouldn't be able to sleep well because of the new IV and I was tired (hence the weepy-ness!).
The night nurse drew blood throughout the night- once every hour. Somewhere around 2 or 3 in the morning, she woke me to eat 4 glucose tabs. I asked her what my bg was, and she told me 75. Ugh! I shouldn't have asked. The endo had told me that the study protocol required them to treat every bg that was below 80 with 4 glucose tabs. She said she understood that was annoying, but that's just what they had to do.
I woke up around 6 to a lot of people in the room. I had one nurse assigned me, and my roommate had two. Then there was the lab tech person who was manning the lab machine, and the endo. So the room stayed crowded the whole morning. The first visit, I woke up to a bg of 120-ish, I think. They gave me a "Boost" drink (sort of like an Ensure) to drink quickly. I bolused for it, but they knew that it would raise my bg faster than the insulin would lower it, and boy did it ever. I can't believe people actually buy those and drink them for nutrition. It's nothing but carbs! It shot my bg up really quickly. That's when they had to put my Dexcom face-down on the bed next to me and tell me not to look at it, because at one point I started freaking out when i saw it said I was 240 and had an arrow pointing straight up!!! My heart skipped a beat when I saw that. They took blood every 10 minutes. I know they were measuring my bg, the amount of insulin in my blood, and some other attributes, too. They then allowed me to walk the hallways on the hospital floor for about 10 minutes. Once my bg leveled off, we did another bolus to get a low. I got down to the 40s within about an hour, and that's when they finally let me have lunch, which was also something I'd previously chosen- a salad with grilled chicken and croutons (which I picked off), plus canteloupe and bread. I didn't eat the bread, but ate the canteloupe first. Again, there was a sheet of paper with EXACT carb counts down to the second decimal point! They also gave me glucose tabs. And then they brought me a cup of coffee, which was heavenly after going all morning on nothing but that Boost drink!!
Once they were confident that my bg had risen enough and leveled off, I was able to leave. My roommate, though, wasn't as lucky. They had some trouble getting blood from her IVs, and had to start 2 new ones. I think she was able to eat her lunch and leave not long after I did, though.
The second visit was about 2 and a half weeks later, and much of it was exactly the same. The first thing they did upon admission, this time, was stick my finger and check my hematocrit, because they said it was low after I'd left the first time. It was fine upon my second admission, and they took me to the same room, and I had the same roommate. The food was all the same, and the times (and duration) at which I could walk the hallways was the same. I also got a little "low" during the night, just like the first time, and again had to eat glucose tabs. I woke up at 160 and my bg shot up even more quickly after drinking the Boost. I bolused even more to get the low they wanted, and sank down to the low 40s (but it took longer to get low than it did the first time). The endo could tell I was low from talking to me, I think. She made me drink juice and eat glucose tabs and was concerned when my bg didn't seem to immediately rise. I still had a lot of insulin on board, though, so that explains it. And this time, my veins were the ones with clots! my roommate got to leave before I did. They had to start two new IVs on me while I was on the bg rollercoaster. When I finally left, after lunch and after recovering from the low, my bg was 240! Yikes!! Boy did I feel awful. I was never so glad to get out of there- I have to say, it was a rough visit!
Even though it wasn't the easiest thing the world, though, I would probably do it again. They are learning so much from our data, and what they're doing to create the artificial pancreas is AMAZING! The endo was telling me about some of the calculations and it sounded so interesting. Comparing the amount of insulin in your blood to your real-time current blood sugar can tell them exactly how sensitive to insulin you are, and that's SUCH valuable information!! Plus, I appreciated that the endo really understood that this is not an exact science, and it's pretty challenging to manage. It's nice to have a super-smart endo, who studies this kind of thing for living, acknowledge how unique this disease really is, and understand that each patient is their own expert because we're all so unique. It was great to talk to her about that.
I would encourage anyone who is available to participate in the APP to get involved, if possible! I believe JDRF is sponsoring most of the APP studies throughout the country, so contacting JDRF to ask them about a nearby study might be the best way to go. JDRF was how I got hooked up with the UVA study.
And, by the way, they do pay the study participants. Not much, but a little more than you need to cover your gas money, so that's pretty good. If for nothing else, though, I would encourage everyone to get involved just so they can get your information!
I will have to post something if I decide to do Phase 3 (which is when they actually hook me up to the real artificial pancreas and let it manage my bg!).