Diary of an Artificial Pancreas – January 2017

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Welcome to our new blog series, Diary of an Artificial Pancreas, written by 12-year-old Jamie Kurtzig. Each month, she will share her day-to-day experiences living with the Medtronic MiniMed 670G closed-loop system, or Artificial Pancreas. Jamie, diagnosed with type 1 diabetes (T1D) at 19-months old, participated in a clinical trial for this system with Stanford University in theĀ summer of 2016. She was able to keep the system and has been living with it ever since.

By Jamie Kurtzig

January 1, 2017

I am in Hawaii right now and everything has been amazing. There were no problems with the Artificial Pancreas 670G on the trip or at the airport. I just NEVER go throughĀ security machines ā€“ I get a hand pat every time, but I did this even before I was loaned the 670G for the clinical trial. However, I spent a lot of time out of auto mode so far on this trip because I was swimming so much. The pump is not water-proof, so whenever I swim, I disconnect. I did not disconnect for swimming with my old Animas pump. AfterĀ the 670G pump has been disconnected for a while (while I was swimming, playing, and splashing), it not only sings/alarms loudly and continuously, but it also

This is the clamshell shaped sensor of the 670G ā€“ it can stay on while swimming!
This is the clamshell shaped sensor of the 670G ā€“ it can stay on while swimming!

kicks you out ofĀ auto mode. It is usually not that hard to get back in. Just be sure you have towels toĀ wrap up your pump so it does not drive beach or pool goers crazy with all of its ringingĀ when disconnected. Other than this small inconvenience, my trip has been really fun. IĀ am looking forward to 2017!

January 2, 2017

Today, I flew home from Hawaii! I love Hawaii, so it was reallyĀ hard for me to leave. During our 5-hour plane fight home, the pump stoppedĀ delivering insulin to me in the third hour of the flight. It kept alarming, saying thatĀ there was a stuck button. Sure enough, when I tried to use the pump, the buttons IĀ tried to press didn’t react. It was like the main button had been sucked in and was stuckĀ in the push position. It started alarming and I got really worried that I mightĀ disturb other people on the flight or go really high since no insulin was being deliveredĀ while this was happening. Finally, we disconnected it and wrapped it up and sat on it toĀ hide the LOUD and constant alarms on the plane! I do not know why we did not justĀ remove the battery to stop the loud alarms, but we did not think of that at the time! Anyway, thank goodness I was at BG 124 with no active insulin (on board) when all of this started so it turned out OK that I had no insulin for a while. We always travel withĀ vials and needles just in case something weird like this happens, so we had a back upĀ plan that we did not have to use. About 2 hours later, when we were driving in our carĀ to our house, the pump suddenly lit back up and displayed a more normal lookingĀ screen. The button was no longer stuck and we got back in auto mode that night whenĀ we arrived home. Before it righted itself, we did call the help line for clinical trialĀ patients. They said we would need to trade this pump in and get a new one. TheyĀ wanted to study it more closely to see what happened. Fast forward a few daysā€¦. Medtronic said that our pump had reacted negatively to theĀ pressure change on the airplane and one other study participant had had this happenĀ as well. They are now aware of the problem and are working on it. I think it is reallyĀ good to know that pumps can react negatively to cabin pressure change ā€“ pleaseĀ always have a back up plan when travelling! Thank you Medtronic for looking into this! IĀ am flying again in late February and I will keep you posted how it goes!

January 3, 2017

Weā€™ve been home from vacation for not even a day and our powerĀ was completely off for the whole day! I was so glad that my pump and importantĀ equipment are battery operated! Today turned out to be a really relaxing day, free fromĀ pump alarms and problems. It all worked out beautifully and I did almost noĀ interventions. We played board games by candlelight and sat by the fire and hadĀ quesadillas, scrambled eggs, and chili with cheese from our gas stove top. It was aĀ great day.

January 4, 2017

Donā€™t Lose Yours! Look how small the charger is in my right hand!Ā 
Donā€™t lose yours! Look how small the charger is in my right hand!

Oh Boy! We just realized that we left my sensor charger and inserterĀ in Hawaii by accident! Thank goodness my grandma found it and Fed Exed it back hereĀ to us today when she found them! They will be here in 2 days! Thank goodness I putĀ in a new 7 day sensor 2 days ago so hopefully it will last another few days (they areĀ supposed to be good for 7 days, though I almost always have to replace mine on day 6Ā it seems ā€“ it just gets weird and less accurate with more alarms around then for me).Ā Fingers crossed it will make it. You only get one of each of these necessary items during the clinical trial period and Medtronic will not offer you another set unless youĀ lose it or it malfunctions. Take good care of these things if you get your 670G system ā€“Ā do not lose track of them. The sensor charger is so small and weā€™ve never had oneĀ before since the Dexcom CGM does not need one (you just get a new grayĀ transmitter every few months).

January 10, 2017

Today was my quarterly visit for the ā€œcontinuation phaseā€ of myĀ clinical trial. I received a replacement pump finally today because of the stuck button airĀ plane pressure problem. I hope that my next plane flight works out well. My mom had really wanted to get a replacement sooner, but you need to pick up clinical trial suppliesĀ in PERSON! We did not feel like driving to Stanford immediately upon getting homeĀ from vacation so we just waited until today to pick it up in person. I got my quarterlyĀ blood draw (I was nervous, but everyone helped me a lot) because it is necessary forĀ the study protocol (one of the only downsides of being in this study). I also picked up theĀ new supplies for me to use this quarter. They told me that I needed to delete theĀ connection between the 2 bg meters and my old pump because I didn’t need the meterĀ to beam to the old pump anymore. I also disconnected the sensor from the transmitterĀ and the pump so that the sensor would stop sending the old pump readings. Then, I hadĀ to pair the new pump to the two existing meters and the existing sensor. My mom andĀ dad were so excited to be getting the new 670G, but we learned that when you get aĀ new 670G pump, it takes 48 hours from midnight that day until you can get into autoĀ mode. (We had forgotten about this fact from the beginning of our clinical trial!) TheĀ pump then learns about you and adjusts its basal rates during those 48 hours. I will letĀ you know on Friday what happens on my first day back in auto mode! Mom and DadĀ were sooooo bummed with this news of 2 more sleep interrupted nights! We haveĀ gotten spoiled!

January 12, 2017

The blue shield of auto mode!
The blue shield of auto mode on my new pump!

Wow! Back in auto mode ā€“ finally! I was overjoyed to see the blueĀ shield of auto mode after 2 days of difficulty with the ā€œnormalā€ pump in manual mode. ItĀ was so nice to have the pump give the smart basal rate on its own and help keep myĀ blood sugar more under control with less effort. I got pretty frustrated after 2Ā days ofĀ checking every few hours and making adjustments manually, but today was like heaven.Ā I just love that feeling of seeing the blue shield after a long time out of auto mode. I had a great day and the fact that it was a Friday definitely helped make the day even better! The blue shield of auto mode on my new pump!

January 14, 2017

Today, I got another really cool new Device ā€“ the NIMA sensor. It is for people with celiac disease (an autoimmune disease which I also have and lots of people with T1DĀ have too). It tests to see if there are less than 20 ppm (parts perĀ million) of gluten in a particular food or drink item. 20 ppm or under is the amount ofĀ gluten that the doctors say are OK for people with celiac. We tested:Ā a birthday cake from Whole Foods Bakery that said Gluten Free, corn tortilla chips that said Gluten Free on the packaging, corn tortilla chips from restaurants, Honey NutĀ Cheerios (one of my favorite breakfast cereals), crepes from the Marin Farmerā€™s MarketĀ that were advertised as gluten free, crab tacos from one of our favorite restaurantsĀ Williā€™s Wine Bar in Santa Rosa, packaged corn tortillas that said Gluten Free on theĀ package, gluten free buns from restaurants, and rotisserie chicken from the FarmersĀ Market. See if you can guess which ones were gluten free – safe for people with celiacĀ ā€“ under 20 ppm.
Answers:
Whole Foods bday cake ā€“ gluten free
Packaged Corn Tortilla chips that said Gluten Free – gluten free
Corn Tortilla chips from restaurants – NOT gluten free
Cheerios ā€“ gluten free
Crab tacos ā€“ gluten free
Crepes ā€“ advertised as gluten free – NOT gluten free
Gluten free buns from restaurants ā€“ NOT gluten free
Rotisserie Chicken from farmers market ā€“ NOT gluten free (must have had a gluten
sauce that they were not aware of)

The black triangle is the Nima and the packaged thing is the tester tube that slides into the sensor.
The black triangle is the Nima and the packaged thing is the tester tube that slides into the sensor.

The test itself takes about 5 minutes so you can learn quickly if it is safe to eat or not.Ā Here is a photo of what the Nima looks like! The happy face is when a food item hasĀ under 20 ppm gluten. It displays a wheat symbol and says GLUTEN FOUND when itĀ is not safe. The sample size for the food is pea sized. It has been really interesting toĀ be able to test all this food that we were never really sure if they were safe enough for me. The cross contamination is always a big wild card. What we noticed is that breadĀ products that are not produced in a dedicated gluten free bakery were not typicallyĀ gluten free due to cross contamination. Also, a lot of marinades and sauces are notĀ gluten free so I try to ask for no sauce. Overall, everything that we are learning isĀ fascinating. I canā€™t wait to keep experimenting with Nima!