Diary of An Artificial Pancreas – November & December 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

My siblings and I at the World Trade Center Memorial – it was so beautiful

Thanksgiving week 2017

Today I am going to New York for the first time ever! I am so excited and we have so many cool things planned. However, I first had to go through airport security and a ton of security lines at the NY attractions. Since I have an insulin pump, I don’t go through the security machines. I usually get to come through a side door and then a guard does a hand-pat with the back of their hands, tests my hands and my pump for some kind of explosive material, does a wave over my body with a “magic wand”, or any combination of these. This was just a normal security pass for me at the airport in Oakland and there were no hiccups. Going through security, however, is often like a box of chocolates – you never know what you are going to get! I had to go through plenty more security lines: at the Statue of Liberty (twice!), Ellis Island, One World museum, the airplane ride from New York to Santa Barbara, Harry Potter World (Universal Studios Hollywood), and the flight from Burbank to Oakland (my family and I have to carry food with us on the airplane in case I go low or just need to eat something gluten free, and the security guy at Burbank was checking literally everything in our carry ons  –  it took like 10 minutes!). So, my Thanksgiving break was filled with lots of security!

I am so astonished right now! On my whole entire trip in New York, I never went low. Not once! I packed so much stuff in my purse and my mom also packed a bunch of sugary things in case I went low, and I never really used any of it. I am patting myself on the back since I think that is the longest I have ever gone without going low (much less while traveling!). Record! I think that part of this is how we did meals and overall timing of each day. We got up at about 9:30 am NYC time and went to bed at 10:30 or 11:00 pm NYC time and ate a giant breakfast every morning with lots of protein and then ate a giant dinner with only snacks in between. I should probably do this the next time I go traveling! It worked!

One of my mom’s friends and a fellow diabetes mom, Mrs. Shenson, gave my mom so many tips on what to do and in what order in NYC. We followed her advice and had the best time! We went up to the Empire State Building, we ate at Eataly (even with celiac – but we took our Nima!), we went to the most awesome MOMA (Museum of Math!!) where we ended up spending 3 hours! We went on the Big Red Bus tour of the city and we got off to touch the Wall Street bull! I especially liked this moment on Wall Street because my family and I play a stock market game where each of us chooses a stock  – one stock – on January 1 that we think will go up a lot during that year. For 2017, I chose MEDTRONIC for my stock because I know how amazing the 670G is and I think a lot of people will want to buy it! However, I did not predict the hurricanes in Puerto Rico that really affected manufacturing and production and the stock. Medtronic stock still went up this year, even with the disasters!

We also went to the Statue of Liberty, Ellis Island, World Trade Center museum. Visiting each of these places made me feel so lucky about…. Life. Even though I have diabetes, I am so lucky to have my freedom and my life. We only got to go up to the top of the pedestal (right below her feet) since going to the crown was sold out, but that is just as tall as the actual statue without the pedestal. I climbed the stairs and felt so accomplished when I got all the way up. When we got to the pedestal, my mom asked, “How would you feel if you were coming from somewhere else- maybe because of war, discrimination, or slavery- and seeing this statue? How would you feel?” This question really got me thinking. I would feel like I had never felt before. It would make all of my struggles worth it. Most importantly, it would make me feel free. Free to live life like I wanted to. Free without restraints. Free to start a new life in the New World. How would you feel? Sometimes I wish there was a sight or statue that would make people with diabetes feel how I would think others felt while seeing the Statue of Liberty. People with diabetes deserve a statue too, but I haven’t heard of one. I also got a book called, Her Right Foot (yes it is a children’s book, but it is really good!) and felt even more thought-provoked. The author says that the statue is moving, but what is she moving towards? I think she is moving towards hope, goodness, and freedom. That is where I would want to be moving to if I was a statue. I would also want to move towards a cure for diabetes. Shouldn’t freedom include freedom from type 1 diabetes? Hope, goodness, and freedom are definitely in the future. I also think that a cure for type 1 diabetes is in the future.

We also saw Aladdin on Broadway. The Genie was one of the most talented performers I’ve ever seen. If I could have 3 wishes, I would wish for 1) Health and Happiness for all, 2) a cure for type 1 diabetes and 3) of course, more wishes!

I did have one terrible night in NYC. I was not feeling well after dinner. My blood sugars were fairly normal. I threw up all over the hotel room at about 1 am and we thought that I might feel better after that, but I did not. My belly was really, really hurting. So, my mom and I took a taxi to NYU Langone ER where they helped me. I got an IV (my most peaceful insertion ever since I was so so tired at 2 am). They did an ultrasound since they thought I might have appendicitis! It turns out, the ultrasound was unclear so they sent some surgeons to talk to us about our options. They poked around and did some other casual tests and we decided that it was not likely appendicitis – thank goodness! Throughout all of this, the doctors did keep saying that I was having high blood sugars and they wanted to check for ketones, but my mom reassured them that we had the diabetes under control and they should just focus on the rest of me. I tend to get high BGS when I don’t feel well so we were not concerned and we were relieved to be high with my throw ups anyway. I got some pain medicine that helped me fall asleep and when I woke up at 8 am, I felt much better. Mom was emailing with Dr. Adi (my pediatric endocrinologist) in California and he helped us feel safe and comfortable with our lab results and other tests. We are so thankful to have such a caring doctor on our team! Finally, we were discharged and took a taxi back to our hotel and spent the rest of the day riding around on the Hop on Hop Off bus.

Happy Thanksgiving! I have so much to be thankful for. I have a great family, amazing friends, a house, a school that I can learn from, a body that works (except for my pancreas), a really cool 670G pump, food to eat, water to drink, warm clothes, and more. And I feel so incredibly thankful for all of that. I feel like I sometimes take it for granted that so many others around the globe don’t have what I have and are still so grateful for what they do have. I find that optimism and gratitude so impressive. Some people with diabetes need insulin, but cannot afford it or don’t have access to it, are forced to suffer and I feel so lucky that I don’t have to do that. I am also, in a way, thankful that I have diabetes because it made me the person who I am today. That doesn’t mean I wish there wasn’t a cure (I TOTALLY wish there was a cure!). But I am really thankful. Just take a moment and think about what you are thankful for.

I spent Thanksgiving day in Santa Barbara with my family – we had so much fun together. We even got to go to Universal Studios to visit Harry Potter world there! I want to go to Hogwarts for high school!

The 5 of us at Universal Studios LA. My dad loves Shrek!

When we got there, we went straight to special services where we got a pass that enabled us to return to popular rides at a certain time and go straight to the front at those times. That was really helpful on the day we were there since it was almost 100 degrees that day (yes in November!) and I was having some lows in the morning before we arrived. It was so nice to have this as an option for our day.

We are home from Thanksgiving travels and it is time to get to work on the Hope Gala. We had our first committee meeting and I was so excited at how many amazing people were there to help JDRF and our family. I felt so special! Eliza at JDRF led the meeting and did an awesome job. We all brainstormed auction item ideas and talked about the different committees that we wanted to be a part of. I joined them all! It is going to be an awesome party – JAMES BOND THEME – please come May 19th. Here is the link to buy a ticket if you can: https://www.jdrf.org/bayarea/events/hope-gala/

We are choosing super fun and interesting surprises for you!!

December 20

Today is the day for my quarterly clinical trial appointment and for my blood draw. Oh what fun it us to get a blood draw! I will just say that blood draws are not my favorite thing in the world. On the drive to Stanford, I drank a ton of water because water makes blood draws easier. The appointment was great, but then it was time for the blood draw. I laid down and then they tried to get the blood, but it didn’t work. We had to try it a second time. The second time it worked, but I had to drink a lot of juice because I was feeling a little faint. I still panicked, and I wonder when I am going to calm down during and before blood draws. After the blood draw, they wanted me to gradually get up over the course of a few minutes, but I was feeling much better after the blood draw. After I got up, one of the nurses remarked, “Look how fast the color returned to her face!” Yeah. After blood draws, I feel great. Hopefully the next blood draw works better for me. If anyone has any advice for me, I’d really love to hear it. Dr. Buckingham usually distracts me by talking with me and my mom holds my hand, but I might still need another tool.

December 25

Merry Christmas! I am so excited to open my presents and see my family. After opening presents, we needed to change my sensor, and we had only 1 left! We were supposed to replenish our sensor supply at our quarterly visit last week, but even the clinical study team was out of sensors! We are leaving for Hawaii tomorrow, so we needed sensors delivered really soon! Since Stanford ran out of sensors (because of the accidents in Puerto Rico where sensors are manufactured), we were getting worried. We only had one sensor left. We knew that sensors were coming soon, but we weren’t sure if they would be here before I went to Hawaii. My mom changed my sensor, but it kept saying, “BG Entry Required”. We entered the BG about 5 times and it still didn’t work. When this happens, it means that the sensor does not work. Of course, Murphy’s Law! Now we really need the new sensors to come!

December 26

Yes! The sensors arrived after my parents had a sleepless night. It made us thankful that we even had the 670G. Every day used to be like that without the artificial pancreas. I can’t believe that we did that for approximately 10 years without any breaks. It made me so grateful that I was accepted into the clinical trial and that technology is improving. Happy holidays!

December 31

Today is the day for us to pick our stocks again. This time, I am preparing even more since I don’t want to lose again to my brother and sister! Kai had picked Nintendo for 2017 and Kelly chose Amazon and both of them went up more than my Medtronic stock this year! Anyway, I did a lot of research and I am sticking with Medtronic again for 2018. I am a believer! My dad chose CRISPR, my mom chose Amazon, Kai chose Tesla and Kelly chose Google since she loves You Tube! Hopefully I will win in 2018! Here I am with my family in Hawaii  – kicking off the New Year! Welcome 2018  – may it be a happy and healthy and safe one for all! Here I am with my family in Hawaii  – kicking off the New Year! Welcome 2018  – may it be a happy and healthy and safe one for all!

Aloha! Jamie