Diary of an Artificial Pancreas – Summer 2017

Welcome to our JDRF Bay Area blog series, Diary of an Artificial Pancreas, written by 13-year-old Jamie Kurtzig. Each month, she shares 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 the summer of 2016. She was able to keep the system and has been living with it ever since.

By Jamie Kurtzig

Surfing the Puerta Vallarta waves! There were so many waves – it was almost impossible not to catch one! Also there is no coral reef or rocks at this beach – just a soft sandy beach so it was extra fun to surf there since you don’t really have to worry about much when you fall off your board.
Surfing the Puerta Vallarta waves! There were so many waves – it was almost impossible not to catch one! Also there is no coral reef or rocks at this beach – just a soft sandy beach so it was extra fun to surf there since you don’t really have to worry about much when you fall off your board.

June 10: I am sooo excited! Today I am going to Puerta Vallarta, Mexico. It is going to be my second time there (well, does it count if I went there when I was one year old and now, I can’t remember anything about that trip?!) and I am going to have a great time just chilling. I got out of school only two days ago and had finals week, so I am really excited to relax and take a break from all of the chaos (even though I love school!). I am hoping I can use some of my Spanish I’ve been learning in middle school too. Going through airport security today in San Francisco was a breeze, unlike my trip earlier this year from Heathrow. I always get hand-wanded, and today, it was quick and easy. My mom remembered to bring the doctor note this time, and of course, we did not need it when she had it! Since I have celiac and we are going to Mexico, my mom brought a carry on loaded up with food – certified gluten free corn tortillas so I can eat like a local with no worries about cross contamination! We also brought a giant jar of peanut butter since everyone in our family loves that and they did not take it at security like they did at Heathrow! In addition to that great news, there were no issues on the plane flight! It was a great day and I am really excited for Mexico!

We just landed in Puerta Vallarta and it is a crazy airport. We walked out after getting our bags and everyone in the lobby is offering grown-ups tequila (it is made nearby here in Mexico in a state called Jalisco) and trying to sell them stuff – like timeshares! It definitely felt like a different country right away!

June 13: I am loving all of the swimming and water activities here in Mexico. Ocean swimming can sometimes be a problem for us folks who wear diabetes stuff on our arms or legs since if the sensor falls off, it is likely lost forever!  We learned this the hard way in Hawaii a few years ago when I went swimming in the ocean and my Dexcom CGM fell off. Gone! We searched for a good solution and found one! We ordered some comfy elastic arm bands/sleeves that just go over the sensor so that it doesn’t fall off or get lost while playing in the water. We get ours from a website called www.Bands4life.net.  I like the black one with smiley faces. These bands are really nice and do a great job of keeping the sensors on me. I had a 2 hour surfing lesson in aggressive waves and the bands did a great job of keeping my equipment safe and on me!

Another problem that I often have when swimming so much is that I get kicked out of auto mode because the sensor loses connection when I disconnect to go in the water. There is no solution for this, but surprisingly, our amazing good luck continued because I stayed in auto mode for the majority of the trip. When we reconnected and entered my Blood sugar, my 670G would magically go into auto mode often. It is not always the case, so I felt lucky. It was really great this trip to swim and play in the water without having to think about diabetes.

June 14: Time changes…They are difficult for everyone, but having diabetes makes them just a little bit more difficult. For example, when I travel, I have to change the time on my pump and blood sugar meters based on the time zone so that it can give the correct basal. But, this trip, my family and I figured out that if we just stayed on our home time, then we wouldn’t be nearly as messed up. I guess that we actually were waking up, sleeping, and eating at the same time as when we were at home. I think that this worked pretty well for us since I was in range for most of the time and didn’t have many problems. The doctors probably will not like that I am saying this, but this time my parents thought it was Ok to skip changing the time even though it is 2 hours ahead of Bay Area time here. They thought this because we basically just shifted our day 2 hours later – we are waking up at 9 am (home time  7 am) and eating breakfast then like I would at home and then we are going to bed at 11 pm (9 pm at home) so we are kind of on the same activity and eating schedule. Usually for vacation, I’ve gone to Hawaii which is 2 or 3 hours behind CA time so I really have to change the time on my equipment, but for a 2 hour forward time change with our schedule, we did not! Our luck continues!

Here is us with lucky Buddha at one of our favorite restaurants at Vidanta - Gong!
Here is us with lucky Buddha at one of our favorite restaurants at Vidanta – Gong!

June 15: Today, I left the hotel complex and went to downtown Puerto Vallarta. It was amazing there, but something not quite so amazing happened. My family and I had heard that there was this really yummy ice cream store around there, so we decided to go and try it. There was this cool-looking ice cream flavor that I wanted to try. We asked them what the ingredients were, to check if there was gluten in it, and the person said that there was only chocolate and hazelnuts in it. I decided to order it, and after a few bites, I thought that there was something strangely crunchy in it. I asked my mom to taste it to see if there were wafers in it, like I thought, but she said that she didn’t taste any. I continued eating it, but then, after I got a big bite of something that really looked like a wafer, I asked my mom again. I guess that she just didn’t get any wafer the first time, but then the second time got some. Although I am not sure how it affected my blood sugars, I didn’t feel well for a few days. Hopefully next time I will be more careful. We had the Nima (gluten tester) on our trip, but we had left it at our hotel! Another lesson learned!

Swimming with the dolphins!
Swimming with the dolphins!

June 17:  This entry does not have anything to do with the challenges of diabetes but I just had to mention these things.  Two of the coolest things we did in Mexico were swim with dolphins and see baby turtles being born. No wonder I want to be a marine biologist when I grow up! The turtle mom lays around 80 soft eggs at once and buries them in the sand on the beach and the marine biologists at Vidanta dig these nests up every night and bring all the eggs under a safe shelter because if they did not, then only 1 of these 80 (on average) turtles would actually make it to the ocean without getting eaten first!

June 18:  Happy Father’s day! I have an awesome dad. We all went to Driven Raceway today to race each other.  I love going fast! My 7 year old brother even got to drive for his first time! He crashed all over and had to point his toe to reach the pedal, but he did well and loved it too. Afterwards, we all went to Willi’s Wine Bar in Santa Rosa, one of our favorite places to eat. The only trouble is their truffle fries smell soooooo good, but I cannot have them since they are fried in the same fryer as other stuff that has gluten. I wish all restaurants had 2 separate fryers!

June 24: Back at home, I went white-water rafting with my dad. It was absolutely awesome! However, it was a bit of a challenge to keep my blood sugars and diabetes all good. I kept my pump and everything else on me until we were literally boarding the boat. There was a lockbox on the boat and so we just stashed everything in there. When we stopped for lunch, I plugged myself back in right away to confirm blood sugar and bolus. Then, I did the same thing when we boarded the boat again. Overall, it went really smoothly and I had a great time, and I did not fall out of the raft!

Here is a picture of my dad and me on the American River south fork. I love my medicalert bracelet since it is rubbery silicone and so soft and smooth and easy to keep on no matter what I am doing. I also love my arm band so my sensor does not get lost in the river!
Here is a picture of my dad and me on the American River south fork. I love my medicalert bracelet since it is rubbery silicone and so soft and smooth and easy to keep on no matter what I am doing. I also love my arm band so my sensor does not get lost in the river!

July 3: I had my quarterly 670G clinical trial appointment today at Stanford. Though I love Dr. Buckingham, I hate blood draws! I am really only afraid of 2 things in life – snakes and blood draws.  I thought that maybe I’d get better at them since I have had to have so many as part of this clinical trial (every 3 months!), but today I noticed something important. Through all of my blood draws, I haven’t really been getting better at handling my nerves. Every time I have a blood draw, I think that I will not get nervous. Each time, I prepare by drinking lots of water, and I am never nervous until they announce that it is time for me to get my blood draw. Today was another example of this cycle. I prepared and then got super nervous right before, even though I was only getting one vile of blood (I usually get like 5!). When the phlebotomist went to draw my blood, nothing came out, which means that I was really nervous. She had to poke me again (one on each arm) and finally, blood came out. It was only about 10 seconds, and in hindsight, I don’t know why I was so scared. I usually have Dr. Buckingham or my mom talk to me about … anything – to distract me, but for some reason it did not work as well this time. Next time, I will try to come up with a new calming method and I hope my blood draw goes better then!

July 4: Happy 4th of July! It was sensor day, today (our way of saying we have to change the Medtronic pump). Everything was going perfectly normal until after the sensor was inserted. It got really bloody, and sometimes the sensors don’t work well if there is too much blood. We decided to risk it, and so we kept the bloody sensor in. We wouldn’t know if the sensor even worked until we waited the two hour warm up time and calibrated. But after we waited and calibrated, it worked. I guess that we just had really good luck, because in the past, we have had to take bloody sensors out. I am not sure what causes the bloody sensors, but I think that it happens when you push down too firmly on the inserter. I have noticed that if you put absolutely no pressure on the inserter, then everything goes fine. I hope I don’t have this problem again, but it was a good experience to learn from. Aside from the bloody sensor, it was a great day! My friend and I even got to lead our local town parade and my sister sang the National Anthem in front of everyone! Go Kelly!

Happy 4th! That purse I have is the one that my mom says is like an organ – I should never leave home without it! Here is me with my friend from school Olivia.
Happy 4th! That purse I have is the one that my mom says is like an organ – I should never leave home without it! Here is me with my friend from school Olivia.

July 16: For the past two weeks, I have been participating at a strings festival. I play the violin and this is my second year playing at this performing arts festival. I have been playing the violin for one and a half years and am really liking it. At the festival, we practice our instruments, play in concerts, and learn to work together as an orchestra. In addition to this, I have some very exciting news. Drum roll please……. A world-famous violinist named Chee-Yun Kim has been staying at our house during the festival! She has been so nice and I had an extra great time at the festival this year since she was staying with us. Also, I have been playing a lot more violin than I usually do. I typically practice for 30-40 minutes a day, but at the festival, I practiced for 5 hours a day. You might wonder if my sensor arm hurts or interferes when playing so much violin but nothing related to diabetes made it harder for me on the violin.

Today, we had a celebratory pizza party after all of the hard work we had done. I had to bring my own pizza (gluten free from Vicolo). It is important for me to bring my own food to places – even if the restaurants say they have gluten free bread or pizza – especially if it is a restaurant that uses lots of gluten in their facility because there is so much cross contamination. We have found that unless the bready facility is a dedicated gluten free facility, then it is best to bring my own lunch. We have also learned that if a “gluten free” bun is from a NON dedicated gluten free bakery, it will often fail the NIMA test from cross contamination. Anyway, I like Vicolo gluten free pizza with cornmeal crust better than any other pizza anyway.  I had a great time at the lunch and at the festival. I am already looking forward to the next performing arts festival next summer! I hope Chee-Yun stays with us again!

July 17: It is really scary to think that I will soon be applying to high school! It is interesting how much things have changed diabetes-wise at school. When I first got diagnosed with diabetes, my family and I moved cities and houses just so that I could go to a school with a full-time nurse that could visit me however much I needed. My parents said I needed to be safe first so that I could learn.  Since I was 4 years old when I started Pre-K at my school, I could not keep my own self safe at all without our amazing school nurse. Now, I do most of the work and I think that I might feel comfortable without the constant supervision of a nurse. So when I am choosing which high school to go to, a school nurse will not be a big factor anymore. I am interested in 5 high schools in my area – some public and some private. I will start all the tours and take the SSAT in the Fall. Exciting! I am trying to do 5 minutes a day of SSAT vocabulary practice – not exciting!

July 18: When I grow up, I want to be an author, a CEO, a marine biologist, and someone who makes a difference in the world. I love to write, specifically fiction and poetry, and I just think it would be so cool to be able to write books and make money. I want to be a CEO because they help people by inventing things that make life easier. I want to be a marine biologist because I have always loved the ocean and its creatures and I would love to be able to study and help them. Lastly, I want to make the world a better place because if I do it, then it will inspire other people to do it until the world is nearly perfect. You might have noticed that I did not include anything about diabetes when I grow up. This is because I think there will be a cure before then.

July 19: This is just a reminder to save the date for the Hope Gala next year, May 19, 2018 – it is exactly 10 months away! I hope that you can make it. Also, if you would like to help with the Hope Gala, please email my mom at sara@kurtzig.com. We will start our kick off planning in August/September!  Thank you!

July 20: Yay! I am going to my first sleep away camp without my parents (unless you count the hospital-stay during the clinical trial). It is a camp called Bearskin Meadows and it is specifically for kids with diabetes. I went to Bearskin when I was really little, but I don’t remember it that much and I went with my parents. I have heard that it is super fun and relaxing. I was surprised when I was looking through a packet of what to bring and what not to bring because it said no phones and no diabetes equipment except for the pump and sensors – and even these CGMs are really optional. My family and I talked about it and we will be leaving the Dexcom at home since the Share app will not work at the camp since it is so remote. I am also leaving my cell phone at home since it will not work up there. I will also not be carrying my purse on me all week!   My mom said before this that, “Your purse is like your arm  – it must be attached to you when you leave the house!” But this week, I will be completely going against that rule! The counselors at camp are in charge of carrying all of the low supplies and other needed items! Such a nice break!

Another interesting thing is that my siblings are coming with me too – it is BUDDY camp. My sister just turned 9 and my brother is 7, so I will have to take care of them. This is also both of their first times at a sleep away camp. We are even taking the bus there and back without our parents! That will be an adventure too! I am so excited and I will let you know how it goes next week – I will have a special edition blog about it late next weekend when I get back – a childhood milestone!