The post bionic blues are back…sigh. I’m a full day 3 into my normal week routine after being able to take part in the Bionic Pancreas study again. I’m back to guesstimating carbs, back to hoping I don’t wake up extremely high or low, and back to feeling of uneasiness from my guilty decision making. Yup, that’s what diabetes is all about.
How was it different?
I think, first and foremost, the second time participating in this study was different because I knew what to expect. I knew there was going to be a nurse with me 24/7. I was able to reconnect with some of the staff I had met the first time so the adrenaline rush wasn’t as high. I was, however, still nervous. The algorithm of the device itself had been altered to more aggressively dose glucagon as I was trending down. I noticed this right away since this model shows the dose when you receive either insulin or glucagon based on the colored lines appearing! The actual amount was only visible on the main screen the last time around.
A few other new features that were added, since my last blissfully bionic week, were my ability to see my highest, lowest, and average blood sugars right on the screen for the last 24 hours along with a moving graph mimicking the Dexcom’s features on the other side of the machine. Hooray! The part of the study I dreaded the most and prepped for this time by relaxing with a glass of wine and a hot shower minutes beforehand, was the IV insertion process. Not only was there now a lighted “vein-finder,” the nurses informed me they were now using smaller IV catheters! Yipee! It’s the little things in life, right?
Mentally the most challenging aspect for me was letting go of the control. As people with type 1 we own our illness; it is up to us to decide when, where, and how much insulin, food, or exercise to intake. This time I did have a few major spikes in blood sugar putting me well into the 300 range…yuck. The first time there was Bluetooth interference, meaning I wasn’t able to receive the insulin dose until after I finished a meal, second came the site failure, and third was a pump cartridge leak. I don’t recall my blood sugar reaching the ketone checking level the last time so at this point I was ready to rip the thing off and give an injection…but no. As part of the protocol I had to be pricked every 30 minutes until my blood sugar came down, and couldn’t give an injection unless my blood sugar remained over a certain threshold for an extended period of time. I had to be patient.
What was awesome about the device was that, despite my ketone state, with this approach, even though I got a hefty few doses of insulin bionically, the pancreas realized I needed glucagon based on my trending down….its smarter than me and I woke up happy and carb free. No injecting then having to treat at 4am!
Studies and trials are not for everyone. I loved participating in this study because I was able to go about my daily routine, go to work, and still see the people I love but there are glitches, frustrations, IVs and site failures that you have to let go of mentally and emotionally to allow the machine and nurses to take over. I sometimes forgot that I was part of a study because I felt like I knew what I was doing and that the bionic pancreas knew what it was doing. But still, one evening, 3 nurses tried to put an IV in and on the 5thpoke I was ready to take the device and run to Mexico. It’s a lot. Every 2 hours I was pricked on the dot, because that is what the protocol says. With my sensor I wear now, I perform a finger stick 3-4 times a day, at my discretion … geesh.
My advice to you is to read the consent forms and paperwork carefully. Ask questions to ensure you fully understand the process, and talk to others to make sure all of your concerns are addressed. The work behind each and every one of these trials is so detailed and specific for a reason, but make sure that it is right for you. This one was perfect for me, and I hope that all of you have the chance to participate and feel confident about contributing towards a cure.
If you want to learn more about this trial check out the video we made interviewing Ed Damiano the creator of the device itself!
If you missed the blog the first time around its not too late to read all about it here.