Diary of an Artificial Pancreas – August & September 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

Here is my hair before and after!

August 1: Today, my hair is finally long enough to donate. I have been growing my hair out for bout two and a half years to get it to the minimum length of 8 inches. It has been a goal of mine to grow my hair out to donate for a while and I decided in 5th grade that I was going to do it (I’m starting 8th grade soon!) I researched the different organizations that collect hair and I decided to give my hair to Children With Hair Loss because they would take less than 12 inches (I gave 9 inches) and also because they do not make the children pay for the wigs. It feels different but much better now. Just because I have diabetes doesn’t mean that I can’t help other causes too. Although I mainly do service for the diabetes world, I also am on Student Council at my school and I was in our school’s Service Club too. I love helping others and I am so grateful for those who help me.

Today, I also went to a Hamilton Master Class taught by someone who was actually performing Hamilton on Broadway! I am a really big fan of the musical Hamilton (my favorite songs are Satisfied and Alexander Hamilton) and we actually got to learn the choreography to Yorktown, a song from Hamilton. It was really cool and I had a great time.

August 5: Because I have diabetes, I can get accommodations on the SSAT test – this is a test that 8th graders take to get into certain high schools. This means that I can bring in food, water, and diabetes supplies, and also get some extra time in case I go low or high or something like that. This is really nice because it just takes some pressure off if I do have a high or low that I need to take time out to treat. I was trying to get accommodations at my school, but then the limited spots for kids needing accommodations filled up immediately. All of the spots for accommodations in all of Marin County also filled up immediately, so I have to take my test about an hour away from my house in San Francisco. I have been studying and I hope that I do well on the SSAT test.

August 13: I am sad to be leaving home but I am also really excited because it is my first time going to Camp de Los Ninos. I have heard that it is an awesome camp for kids with diabetes. I went all by myself this time – no sister and brother! I was in the Mountain Lion cabin with about 10 other girls near my age. My counselor was amazing Sarah from Stanford who I knew already from being in the clinical trial for the 670G. Thank goodness she was there with me to help me out with my device since no one else might have known how to work it. Our cabin was new and beautiful and even had a bathroom for us inside the cabin so we did not have to go outside at night to go to the bathroom. Yay! There was even built in light in each bunk bed station so we could turn on and off our own little bed light or choose to read.

One thing that was so special to me on this first day was hearing about my 7 year old brother Kai who chose – on his own – to enter the TrialNet study to help the scientists learn more about relatives of people with diabetes. This means he had to have a blood draw. Mom said he was so brave. He was so proud to tell me that he got a blood draw for me. I felt so special and honored to have a brother that loves me so much.

Dinner in the cafeteria was our first meal there and it was delicious – they had gluten free food for me and the other kids with celiac at a separate buffet area. They also had vegetarian options too for anyone who wanted that. After dinner, we went to the campfire and sang songs and did skits – some were the same as Bearskin’s Buddy camp and some were new. My favorite songs were “Little Red Wagon” and “Sunny-side.”

August 14: Today, we got to do Campers Choice – I chose Rock Climbing – it was so fun! I rang the bell at the top of the wall twice! Afterwards, we had “Diabetes Dialogue” where we learn more information about life with type 1 diabetes. In this particular session today, our cabin combined with a boys cabin of similar age and we talked about what we thought people should know about diabetes. Many campers said that it was annoying when people thought they had type 2 diabetes or thought that they could not eat sugar or thought that all people with diabetes were fat. We talked about how you could address this misinformation. You could fight the people, you could explain to them the differences between type 1 and 2, or you could not say anything. We decided that the explanation way was the best.

August 15: It is really cool to see how similar yet different Bearskin Meadows and Camp de los Ninos (CDLN) are. CDLN is a lot fancier. There is Camper’s Choice at CDLN, but not at Bearskin. I really appreciated this. There is Diabetes Dialogue everyday at CDLN but only once at Bearskin (called Rap session). But I feel like Bearskin is closer to “real” camping (sleeping on decks under the stars) than CDLN and there was a little more sense of community at Bearskin. There is Insuline at both camps where we all check BG, calculate carbs and bolus while being supervised by the medical staff. Many of the fun activities are the same – pool, arts and crafts and archery. When we swam today at CDLN, the counselors all made sure we took off our pumps so that our equipment would be safe – one less thing for me to have to remember or think about. My sensor did not fall off in the pool today like it did at Bearskin because I put on my handy dandy arm band.

I got my set changed at Rest Hour today too and we did it in an unusual way for me. They changed the actual infusion site to a different spot but kept the insulin leftover from my old set. They said there was some insulin left and they did not want to waste it, but I am not sure how this will work. I guess that I will see how this plays out. I am glad Counselor Sarah is here. Campers Choice today was Fire Building! One of my favorite TV shows to watch with my family is SURVIVOR, where they build fires all the time. We learned that to make fire you need kindling first, then small sticks and then bigger sticks. The kindling can light fast but not stay lit for long. The sticks act over a long period of time after the fire from the kindling has spread. This reminded me of how to treat a low blood sugar. You need your FAST sugar first – like glucose tabs or raisins or juice to kick in quickly but it does not last that long, so you need to follow it up with a slower acting sugar like the sticks (crackers, fruit, etc) to keep you up for a longer period of time. Then, we had a fire building contest to see whose fire could burn through a string above the fire first. My team WON!

Today, Diabetes Dialog was Charades with diabetes words. It was super fun. After this was Capture the Flag! I had a BG of 80 so they gave me 2 glucose tabs and a handful of crackers to make sure I had enough carbs for all the activity. After this we played a game called CITIES – an active scavenger hunt where you go around looking for morse code flashed and you try to stay away from the “wolves” (Counselors). We hide and fast walk quietly and complete challenges against other teams – all around the whole CDLN campus. We lost but I still had so much fun playing this!

Here is a photo of me post-camp with Dr. B (he broke his hand playing basketball!) and he still stayed and helped us all! And Jenny – who was one of the amazing camp counselors and it also involved in my 670G trial.

Friday August 18: I am so sad but happy! I am leaving Camp De Los Niños today and going home. I had a great breakfast, packed up all of my stuff, got all of my cabin mates to sign my Camp De Los Niños shirt, said goodbye, and then left. On the way home, we stopped for a visit at Stanford with Dr. Buckingham since Stanford was on the way home, so we decided why not kill two birds with one stone (not that I want to kill a bird. I love birds). At the appointment, I was so tired from camp, that I didn’t panic at all for the blood draw. It was my smoothest blood draw ever! They also observed from looking at graphs of my blood sugars that I was going high a lot of the time after  lunch. Dr. Buckingham then told me that I needed to adjust my insulin to carb ratio to be slightly more aggressive at that time. This shows that everyone needs to make adjustments sometimes, even with the artificial pancreas.

Mid-August: This summer, I wanted to try being in a musical production. I’ve always wanted to see what it is like, but have always been afraid of the time commitment that it usually requires. This opportunity in Mill Valley was 10 days from start to finish. I auditioned and surprised myself and I got BARNUM, the lead in the play! We learned everything from stage make-up, props, lighting, making resumes, and marketing our play in a commercial. It was weird to play a boy. My hair needed to be all slicked down and back. Thank goodness I have short hair now. I was nervous to sing especially because I am self conscious about my voice sounding bad. Marissa, the amazing camp producer, and I talked about what would happen if I felt high or low during the actual performance. We came up with a plan to have there be an intermission if I went low. I love this plan since it seems smooth. I did not need to do it, but we made a plan for it. It always feels good to me to have a plan.

Late August: This is my first week of school as an 8th grader! Yay! We had our meeting with the school nurse and I thought Amazing Aaron might fall out of his chair. My family and I had decided together this summer that we would remove the Dexcom share since I am on the 670G that has its own sensor. My mom was so worried to do this, but she saw how great I did at taking care of my pump and my diabetes since we removed the Share for Bearskin Meadows camp in July. So, my plan for this school year is for me to mainly manage my diabetes together with my partner, the 670G. I will check in with Nurse Aaron at lunchtime and that’s it unless I need to call him. I am so excited about this new plan. We will see how it works. My mom is super nervous about it.

My entire 8th grade class went to the American River to go on a rafting overnight. My mom was one of the 8 chaperones as well. We followed the same procedure that my dad and I did earlier in the summer and it worked the same – well. I loved being in the front of my boat during the “troublemaker” rapid – the hardest rapid that we went on this week. I also never fell out of the boat but we jumped out a lot to play in the river. It was soooo fun!

September 1: Today, my mom and dad left for Burning Man! They have had it on their “bucket list” since I was born, and have never felt like they could go. Thanks to the 670G and to borrowing a satellite phone/device for emergency, they went. They loved it and everyone lived☺ My mom would not give me a photo for this.

September 9: Happy Birthday weekend to Mimi! Today, my family and I went to an exhibit called “Compassion”. It is a church related group that tries to match families in the US with a child in an underprivileged area outside the US. We looked at all of the children’s information and really looked for one with type 1 diabetes but could not find one. We settled on sponsoring a young child from Peru who loves to sing. I am excited to write my first letter to her. This outing reminded me how lucky I am to have been born in the US and to my family where I do not worry where my next meal will come from or if I will have enough insulin.

Tonight, I went to my good friend’s bar mitzvah. It was one of the best parties I’ve ever been to (and I’ve been to a lot of parties). They had a light up dance floor with dance leaders and everybody was dancing. They had so nicely made some gluten free options for me for dinner – that really made me feel so special and it shows that they are great friends. Great friends go above and beyond like that. I am so grateful to them!

September 28: Today was my first official high school tour. I toured a school called Marin Academy (MA) in San Rafael. I was so impressed by the level of education and the fun social life. I loved that they had a lot of class options for students and also a lot of electives and clubs, including a Harry Potter Club! My ambassador took me to lunch at their cafeteria and they even had many gluten free options, including gluten free cookies! I know that is not important to look for in a high school, but it really shows that they care about their students. I even Nima Tested it (see previous blog about this awesome device for people with celiac) and it passed the test! I had a great experience there and think it was a great school. I am excited to keep learning more about the high school process and MA.

Here is me with Nicole (head of JDRF Bay Area) and my mom at the kickoff at my dad’s office!

Tonight was the kick off for the The 2018 Hope Gala! I am so happy that both my grandmas and my great aunt was there to support me! We announced our theme for the big fun party – JAMES BOND! – and everyone seemed to like it. I met lots of new people who are going to be helping with the Hope Gala and I was so inspired by them showing up to help. Thank you so much! You can buy your tickets now – or a table! Please come – it will be so fun. Here is the link where you can buy your tickets! Please share with all of your friends and family!

Aloha! Jamie