The emotional highs and lows of giving up control

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Sunday morning, I arrived in New Haven and met with the Yale staff, the other participant in my artificial pancreas (AP) trial, and a member of the Medtronic team (we were testing a Medtronic closed-loop system). It took about an hour to set up the AP system. I already had inserted a Medtronic continuous glucose monitor sensorā€”a device that is inserted just like an insulin pump siteā€”that sends glucose readings to the pump every 5 minutes. I was also already wearing a Medtronic insulin pump I received earlier in an orientation session. The first day of the trial I was given a Samsung phone and a small black translator box. The translator enabled the phone to be able to read the sensor and my sugar levels and tell my pump what insulin to give, or to stop giving insulin based on my results. This mimics what a person without T1Dā€™s pancreas would do, hence ā€œartificial pancreas.ā€ The Yale research team connected and calibrated all of the devices and made sure they were working properly. The closed-loop system began and we went off to lunch!!

While on this system, I have to calibrate the sensor at least twice a day to make sure it is reading my sugar levels at the correct level. I also have to enter whenever I have a meal and how many carbs I think it is (the research team told me to overestimate when in doubt). When I started on the AP system, my sugar levels were a little high, so I was frustrated when I ate lunch and my number continued to climb higher into the 200s. That frustration soon turned to elation when I watched how the AP system handled my high sugar level after lunch. My sugar level quickly began to descend and then leveled out at 130 for several hours. Thatā€™s pretty amazing for meā€¦ I couldnā€™t believe I didnā€™t bottom out and get low, even hours afterwards I remained steady! I was impressed, but ready for the next test. For dinner the first night I went to a Spanish tapas restaurant where I indulged in sangria, sweet potatoes, empanadas, and charcuterie. I kept my eye on the Samsung phone the whole time, just waiting for my sugar levels to spike, especially with the sugary sangria that is nearly impossible to correctly carb count. I went to bed that evening never going higher than 136. Except for a trial-mandated 3 a.m. sensor calibration, I slept soundly and woke up with great sugar levels again.

katie_deviceDay 2 I woke up and went on a long power walk with my mom. I entered into the AP system that I would be exercising for an hour, and it automatically shut off my basal. During different points of the walk, if my sugar levels began to rise I was given a basal dose. I have always had problems going low when I exercise, but I didnā€™t have one issue during our outing! That night right before dinner I calibrated my sensor, but because my meter BG was far off from the sensor reading, the system kicked me out of closed loop. I had to manually bolus for my meal and then in a half hour I recalibrated and was back on closed loop again. It wasnā€™t a big deal because they had told me this might happen, and it is a safety feature of the system.

Day 3 so far has been a very frustrating day for me. My sugar levels tend to rise in the morning the second I get out of bed even if I donā€™t eat anything. I feel as though the maximum basal the system is allowed to give me isnā€™t enough to keep up today. My sugar level went up to around 190 and then came back down. While I was glad the system brought me down quickly and efficiently, wasnā€™t this system supposed to prevent me from getting high in the first place? At the end of the day it was pointed out to me that my sugar levels were only over 160 for an hour the whole day, which put it in perspective for me. I should be jumping for joy about that, but I had the romantic notion that my sugars would be 100 the whole time.

The hardest part for me so far has been giving up control of MY diabetes. I have spent 18 years wishing away my T1D and here I am with that opportunity, and it is throwing me for a loop knowing I will not be the one deciding what insulin is going into my body. I know I need to trust the doctors, the devices, and the Medtronic engineer, but it is easier said than done!

JDRFā€™s Clinical Trials Connection provides people affected by type 1 diabetes (T1D) and its complications with up-to-date information on clinical trial participation opportunities.

Clinical Trials Connection is an online service that allows you to ā€œopt-inā€ to get information about trials, and access to them. It contains information about all currently active diabetes trials in the U.S and U.K. Based on the criteria you choose, the connection provides you with information about selected trials and how to contact the researchers conducting them. You can also choose to receive regular updates so that youā€™ll know when new trials that meet your criteria become available. If you find a trial that interests you, you can discuss it with your doctor and also contact the trialā€™s primary investigator with any questions or concerns.

Read Kady’s previous blog post