Diary of an Artificial Pancreas: Special Edition – Sleep Away Camp!

Welcome to our JDRF Bay Area blog series, Diary of an Artificial Pancreas, written by 13-year-old Jamie Kurtzig. 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

Friday July 21: I am so excited because today I am going on my first ever sleepaway camp! I had to wake up early (L) to catch the Bearskin bus in San Francisco. My brother and sister and I each had our own wheely suitcase plus a pillow plus 2 sleeping bags each and a backpack – all for 5 days! I was not nervous as our bus pulled away – mostly just excited!  I hadn’t been to Bearskin Meadows in years, but I vaguely remember going to Family Camp with my parents and Baby Kelly years ago. I remember cinnamon rolls, skits, campfires and the “Little Red Wagon” song and I am happy to report that all of these things were still there this trip!  EVEN GLUTEN FREE (which I did not need years ago) CINNAMON ROLLS this time!

Here is a photo of my brother and sister and me just before the bus pulled away for camp!

There were about 15 – 20 kids that got on the bus at my stop and then we picked up tons more kids until the bus was full. I sat with my sister on the ride and I made some new friends on the bus too. On the bus, we watched a bunch of movies, including Shrek, one of my favorites.

Six hours later, we arrived! I know there was a big fire happening in Mariposa area, but we did not see or smell any of it. The counselors organized all of us into decks. My siblings and I were sorted (like Harry Potter!) into the Redwood Deck with 10 other “buddy campers” and 5 counselors! Everyone was age 7 – 15 years old and it was a pretty equal mix of boy and girl campers – maybe a few more girls. On our deck, most of the “buddies” were related to each other in some way – cousins or siblings.

We got all set up on our outdoor decks by putting anything with a scent in the bear boxes next to our deck platform – like shampoo or toothpaste or sunblock. We also got our sleeping bags set up and put the bottom sheets on our individual bed mattresses that were outside and off the ground!

Then, we went to dinner. It was SUPER NICE because they had carb counts for everything and a whole gluten free kitchen that was separate from the usual kitchen (because a lot of people with type 1 diabetes have celiac also)! The buffet dinner was yummy! They had a salad bar and a few entrée choices and side choices so that there was something for everyone.

After dinner, we had opening night campfire and we met Uncle Rich who is the archery teacher at Bearskin Meadows – he was there a decade ago too when I went to Bearskin with my family! He lead us in songs with his guitar and all the skits that we got to do tonight with our deckmates were so fun! Tonight, Redwood deck did “Redwoods got Talent” for our skit – I ran around the world in the time that everyone could blink their eye (you just pretend to be exhausted after their blink!)

It was so beautiful going to bed under the stars tonight. I’ve never done that before. It was cold but we had 2 warm sleeping bags each. It was so quiet, except for the occasional owl sounds.

Saturday July 22: Redwood deck was awoken to sounds of music blaring on the camp sound loud speakers around 7/7:30 am. The songs were all SEA related since the theme of this Buddy Camp was Pirates and Mermaids. I woke up to Moana and Little Mermaid songs this morning! Before breakfast, the counselors give us 5 minutes to get ready which is not easy for me since I am used to taking my sweet time in the mornings. I struggled with this all week and something had to be missed – in my case, brushing my teeth and hair  had to get skipped since you cannot skip going to the bathroom and getting dressed! Sorry Mom!

Before breakfast, they also did a cool tradition. For everyone whose first time it was at Bearskin Meadows (my 7 year old brother Kai in our case), you run through a “FIRST TIME TUNNEL” of campers’ hands. My brother loved it. My sister was jealous because she had come before when she was 1 year old so she does not remember it and she did not go in the first time tunnel today.

We played sports and games like King of the Hill tag, Birthday tag, Sharks and Minnows! We also went to arts and crafts where we made dreamcatchers! Today, I went really LOW (40 something) during Arts and Crafts  – I think because I was really active at Sports and Games and they gave me 4 sugar cubes and then 4 glucose tabs!  This is actually the most sugar I’ve ever had all at once! My 670G did alert me of course but we have it set to alert at 65, so it alerted me and I checked within 5 minutes and I was actually already 40 something. This taught me that maybe I should raise my LOW alert in my pump when I get home. I did feel a little bit dizzy and out of energy at arts and crafts and like I wanted to eat and sit down so I knew I was low, but sometimes, it happens really fast. Also, I am not really used to needing that much sugar to raise my blood sugar. We have learned that 1 gram of sugar raises me roughly 5 blood sugar points so   sugar cube may raise me 20 BG points – roughly of course!  So, I had 4 sugar cubes and 4 glucose tabs ( 4 grams each) so 32 grams of sugar which should have raised me 160 blood sugar points, which is pretty close to what actually happened. 30 minutes later or so, I was in the 200s from the 40s. I did speak up and say that I thought all this sugar was a little bit too much, but the counselors explained to me that there was a camp protocol about lows like this.

What I have been noticing about camp that is different at camp than at home with the 670G is that everyone checks their Blood sugar with a finger stick before every meal, snack or activity. At home, I normally check only 4 times a day! I know they do this at Bearskin to keep everyone super safe and because not everyone has the basal rate modulator 670G like I do.

Every meal time, we would start by doing a finger stick. Then, we’d get a paper plate and we’d write our name, our BG number and how many carbs we were going to eat (a giant whiteboard in the cafeteria had a list of all the foods and how many carbs everything had). The counselors would then supervise my blousing. I would then take my plate and get my food from the celiac buffet kitchen. Even though I can do this on my own at home, it was nice to feel supported here. The campers that did not have celiac would sit back down at their deck table and wait for the “hoppers” (campers who wanted to be the the food collector/deliverers that meal) to bring food to the table. We were supervised every step of the way when it came to giving insulin and carb counting. I never chose to be a hopper since I did not want to risk cross contamination. My siblings were hoppers and they didn’t even spill! Yay Kelly and Kai!

Awesome Redwood deck campers!

Sunday July 23: This morning we went to the pool. It was really nice and refreshing after camping and being dirty/dusty for a couple of days. It has been really hot here during the days – like high 80s/low 90s and thankfully, it cools down at night. Each deck had a scheduled time at the various activities and this morning was the REDWOOD time at the pool. I wish we could have gone more often than just this once. We played water polo and keep away and I actually saved some shots and scored a few goals. When we play water polo in PE at my school, this never happens. I am usually almost drowning from my fellow teens pushing me under while they go for the ball. So, I was excited today to contribute!  However, while I was trying to block a shot, my pump sensor came out in the pool!  I had forgotten to wear my trusty arm band (mentioned in previous blogs!) so it was my fault. Thankfully, we did not have to look for the small sensor in the pool since the IV 300 tape I wear over it sometimes was keeping it dangling on my arm. (We have had to pool dive before to find missing sensors!)  I kept playing until pool time was over since my pump still functions as a “normal” pump – it is just not able to be in auto mode or be a “smart” pump that knows my blood sugar. I went to the nurse’s office after pool time (they even had a medical team there that knew all about the 670G!) and we charged my sensor. This is something you have to do with the 670G that I have not had to do with any of my previous pumps/sensors. It takes about 20 – 30 minutes for the clamshell sensor to charge between insertions. We put a new one in, I pushed “start new sensor” on my pump and then got back to activities. 1 – 2 hours later, my pump buzzed to ask me for a BG which I entered and then I was back in auto mode shortly after that. Yay!

We also got to have a splash fest today which was so fun!  I dunked my counselors and threw water balloons at everyone. There was also a giant tarp acting like a slip n slide which was really fun!

Monday July 24: Today we went to “Nature” class where we took a hike to the “Cave”. The cave was on a hill about 30 minute walk from camp. I don’t think bears live in there. In some seasons, people can even walk through this cave, but we could not because it was knee deep with water. It was super cool and there was a great view from up there. Then, Will Cross, a guest speaker came and told of how he was the first person with type 1 diabetes ever to climb Mt. Everest. It was so inspiring to hear that his diabetes didn’t stop him. Diabetes did make it harder for him for example, he had to keep his insulin from freezing on the snowy mountain and he had to be able to manage his diet on his long climb. He did not know what the freezing temperatures and the unusual diet and the huge amount of climbing would affect his blood sugars each day. I heard that the DYF (Diabetic Youth Foundation  – who puts on this Bearskin Meadows Camp) also puts on a  Mt. Whitney climb. I hope I can do it one day. Even though I don’t want to climb Mt. Everest, his talk was still super inspiring!

Archery was next and I actually popped 2 balloons (the target)! I was so surprised that I hit the target since historically I’ve been awful at archery. I then changed my set because I was on my 4th day of that set. I went to the medical tent again to do this and Dr. Mary helped me. All went smoothly!

In this photo, you can see what my pump looked like in TEMP TARGET mode. This was new for my mom too!

At dinner, after I wrote my BG  (80s) and my number of grams of carbs down on my paper plate, the counselors and Dr. Mary asked me to go on a TEMP TARGET. I had never done that before with the 670G (I used temp basals all the time with my Animas pump) so I was a little uncertain about how it would work. All I had to do was set how long I wanted the Temp Target to last for (they asked me to set mine for 10 hours!!) and the target in my pump defaults to a BG of 150 when in this mode. (My usual target is 120).

Tuesday July 25: I awoke to being in MANUAL mode and I am not really sure if the Temp Target worked. 🙁 I was a little bit high this morning when I woke and out of auto mode. But a little bit high is better than a little bit low. I often sleep through my pump alarms. Even my brother who was sleeping next to me reported that he woke up overnight because my pump was alarming so loudly. I am grateful to be a good sleeper. At home, my parents listen for my pump on my old baby monitors. Anyway, I had a delicious breakfast and I managed to get back in Auto Mode quickly by following my pump’s commands.

I then went to Nutrition class where we discussed the different food groups and how to eat healthy. Thankfully, I knew a lot of this information from life. Next was Diabetes Ed class where we played Diabetes Jeopardy. There were different categories like Highs, Lows, Activities, School, and Helpers. This is interesting because I feel like these are very accurate subdivisions for a child with diabetes. For example, one of the questions under ACTIVITIES category was “Why can you sometimes go high after exercise?”   I knew the answer to this because I am a short distance runner and my adrenaline pumps when I run short distances and this makes your blood sugar rise. I am proud to say that my team won Jeopardy – thank you teammates!

After lunch, we went to RAP sessions where we discussed diabetes. We were divided into 3 groups – people with diabetes, siblings of people with diabetes, and friends of people with diabetes. Then, those 3 sections were divided further by age. We shared how long we had had diabetes for (I had diabetes for the second longest in my group, including the counselors, even though I was the youngest in my group!)  Then, we shared a positive of having diabetes and I said that it has helped me become more responsible, more aware of my body and more understanding of other people (one person said it helped them skip lines at amusement parks).

We then discussed negatives, and I said that having diabetes sometimes makes other people think that I am dramatically different than they are even though I know that we are mostly the same. For example, many people think that I cannot do sports or eat ice cream. I hope that they learn from me and others with diabetes, that we can! Someone else in the group said that they were too scared of what everyone would think about them having diabetes so they decided only to tell their closest friends about their diabetes. This was really interesting to me because basically everyone I know knows that I have diabetes. I am guessing this is in part because I have had it since I was a baby and my parents wanted those around me to know for safety reasons and also because they did not want me to grow up feeling embarrassed about it in any way. A girl in the group said that she doesn’t like it when other people (without diabetes) think they know more than her about diabetes. This is true for me too when others try to micromanage my diabetes.

We then discussed if we had had an overall positive or negative experience living with diabetes. Everyone but me and one other person said their experience was negative. I have had a positive experience because diabetes is a part of who I am and it is just another step that I have to take each day. I think that because I don’t remember life without diabetes, it makes my experience more positive since I cannot compare it to any other life. We were also asked, “If there was a cure for diabetes, would you take it?”  Only 3 of us said yes out of 4 counselors and 12 campers. Everyone else  – 13 – said no. I said yes because it would make life so much easier for me. Others said no because diabetes has already changed them and they thought it would be hard to change again and because of the friends that they make and the diabetes camps that they love attending.

Finally, they asked, “If diabetes was a person, what would you say to it?”  A lot of people said that they would say really mean things/words to it. But I would thank diabetes for changing my life and for making me the person that I am today. It was fascinating for me to learn from other kids like me and to hear their perspectives. I long for the day when there will be a cure for diabetes!

After the rap sessions, I realized how lucky I was to get diabetes at such a young age. I have stayed at my school ever since I was in Pre – K and kids that little don’t judge people because of things like diabetes. (In fact, my parents picked the school when I was 3 years old because it was one of the only schools in our country with a full time school nurse!)   Over the years, lots of the kids from Pre-K have stayed in my class and they have helped show the new kids that it is nothing to be nervous about. I am so grateful for this acceptance from my classmates and the support of my school.

After all of this, we went on a treasure hunt to find gold! It was so fun! Then we had closing campfire where we performed skits and sang songs. I am so sad that I am leaving tomorrow!

Wednesday July 26; We all got woken up early to pack and get ready to go home. We had cinnamon rolls for breakfast and my gluten free one was soooo good! The bus ride was great and we all watched lots of movies on the way home. It was great to see my mom and dad in the parking lot when we arrived back in San Francisco. My sister actually cried tonight at bedtime wishing she was back at camp! My brother realized he left half his stuff at camp – including one boot, his pillow, his bed sheets and his new backpack, but DYF found it and is so nicely sending it to us! I can’t wait to go back to Buddy Camp again next year. I am also lucky enough to be going for my first time to Camp de los Ninos in a couple of weeks before school starts! I will let you know all about it!

First DYF Buddy Camp! Can you find the 3 of us? 🙂 See you next year!