Diary of an Artificial Pancreas – Summer 2018

Welcome to our JDRF Bay Area blog series, Diary of an Artificial Pancreas, written by 14-year-old Jamie Kurtzig. In each entry, 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.

Saying goodbye to my amazing Nurse Aaron.

June 7

Today is my last day of classes at my school! Wow – done with Middle school! Today is also my last day with Nurse Aaron. I am so sad to be leaving this school after 10 years. My amazing fabulous Nurse Aaron is also leaving for a school in Switzerland – that is an even bigger change than me going to high school in San Rafael! Thank you Nurse Aaron for always helping me feel safe at school! I remember years ago meeting up with Aaron at least 3 times a day every day and now, with the 670G, I only meet him as needed. My little brother and sister even saw Nurse Aaron as much as I did for their various bee stings, scraped knees, and head bonks! I hope I can see you in Switzerland someday!

June 8

Yay! No! Today I am graduating from middle school! I am really excited for high school and all of the adventures it will bring, but I am also sad that I will not be able to see my friends every day. I know that I will make new friends in high school and that I will still keep in touch with my middle school friends, but I still feel sad that I won’t see them as much.My favorite part of the graduation was speaking about and thanking my amazing parents whom I would not be here without and presenting them with much-deserved roses. I love them so much, and would do absolutely anything for them. ❤ In the second half of the ceremony, the awards were presented. There were awards for excellence in athletics, visual arts (one of my friends got that award – go Mae!), and performing arts. There was also an award for the girl and boy who demonstrated the most leadership (I was so happy to see one of my friends get that award- Ella really deserves it). Thinking about Ella and her award, I really reflected on what it is to be a good leader because I would like to be one in life. To me, right now, being a good leader is leading by example, lifting others up instead of putting them down, being open to all different points of views and people, and inspiring others to be their best selves. I hope I do this my next 4 years of high school. I even decided to take a class called LEADERSHIP at Stanford Online High School – can’t wait to see what I learn. I was so honored to receive the academic excellence award for anyone who received a 4.0 every semester in middle school. We then received our diplomas (my little sister, Kelly, helped pass them out), and I almost burst with emotion. It will be a big change for me to leave my school where I have been going to since pre-k and go to a completely new school where I will barely know anyone! But one thing is for sure, it will be an adventure!

Photo of my friends and me at Graduation!

June 22

The Medtronic 670G was approved by the FDA today for ages 7-13 (I am now 14 years old, but when the trial first started, I was 12)! I don’t know whether to be happy or sad about the approval. On the one hand, it will give me the opportunity to maybe try a new device (my family and I are thinking about looping). I will also be able to stop getting the mandatory blood draws every few months. On the other hand, it will be sad to not be on a clinical trial because I will miss the amazing doctors and nurses helping with this study (shout outs to Dr. Buckingham, Sara, Jenny, Ideen, and the team!). I am excited to see that everyone can now use this amazing device! That is, after all, why I joined the trial: to help further T1D research and to make living life with T1D easier. If you are considering using the 670G, I highly recommend it!

July 2018

Milan and Verona:
Wow! I am so excited for our trip! We are going on a big trip this summer to celebrate … life! We are headed to Milan, Verona, Venice, Venice’s islands, Lviv (in Ukraine), Uzhhorod (also in Ukraine), and Rome. After our super long flight, we arrived in Milan. One of my favorite parts was seeing and going into the Milan Cathedral (aka the Duomo di Milano). There was a hole in the ceiling, and depending on the time, the light would shine through the hole and onto an astrological sign (I am a taurus). We also went to see the famous “Last Supper” painting, and I thought it was so cool how they had a sculpture of the painting so that blind people could “see” it. I also thought it was amazing that the building it was in was mostly destroyed in the war, yet the Last Supper wall was one of the only walls still standing. A miracle really! We also went to a museum all about Leonardo da Vinci, and after seeing all of the cool things he did (painted the Last Supper and the Mona Lisa, sketched the Vitruvian Man, and invented dozens of flying machines, parachutes, “machine guns”, and so much more), I think that he and Ben Franklin are pretty underrated people in history. They were so far ahead of their times, and I do not think that they get as much credit as they deserve.

On our way to Venice for our river cruise, we stopped in Verona to see Juliet’s iconic balcony. After reading Romeo and Juliet in 7th grade (I found it really hard to understand, but I appreciate the story), I thought it was so cool to see “Juliet’s home”. It is actually not her home because she was not a real person, but I find it so interesting that Shakespeare wrote a whole book about “two lovers in fair Verona” when he never even made it there himself!

We are now in Venice, enjoying our spectacular river cruise in northern Italy. I loved going to the University of Bologna since it is one of the oldest universities in the world, and it has a super cool room called The Anatomical Theatre of the Archiginnasio. There was a table in the middle of the room, and it was where they dissected human and animal bodies. There were also statues of famous people in the medical world like Hippocrates and Galenus. I hope that maybe someday I can take the Hippocratic Oath, and become a doctor! We also went to the island of Chioggia where we swam in the Adriatic Sea, rode in a Venetian gondola (and even tried rowing one!), watched maestros on Murano blow vases and horses out of glass, and saw people making beautiful lace patterns on Burano. On our last night in Venice, we stayed in a hotel called Locanda Vivaldi and watched a Vivaldi concert where they performed all four of Vivaldi’s Four Seasons! This was so exciting for me because I am going to play Summer by Vivaldi in just a few weeks with Chee-Yun at the performing arts program.

We arrived in Lviv, Ukraine today (I know it’s an unusual vacation place), and it is so different than what I am used to. There is a whole different alphabet for the Ukrainian language, and that made learning Ukrainian super difficult! It took me about 5 days to understand that hi means Привіт (pronounced pryvit), thank you means Дякую (dyakuyu), and goodbye means до побачення (do pobachennya). I noticed that in Lviv, there are many street performers playing music, singing, and acting like gold statues. There were also many kids who looked younger than I am who were playing their instruments on the streets.

My favorite thing today was when my family and I made Ukrainian soap! We made the soap mixture, put our choice of flavor/herb in it (I chose a traditional Ukrainian herb, but my sister chose something like cotton candy or chocolate), and put them in molds. I love using my soaps! They will always remind me of Ukraine.

While we were exploring, we stumbled upon a park with kids playing soccer in it. My brother loves soccer (and pretty much every other sport), so he really wanted to play with them. Since they did not speak that much English, and we (obviously) did not speak much Ukrainian, it took a minute to tell them that my brother, Kai, wanted to play with them. It was so fun watching him play soccer with the Ukrainian kids! They would pass the ball to him, he would pass to them, and it made me think “that is what traveling is about.”

A typical country road near Uzhhorod

Today we drove all the way from Lviv to Uzhhorod (still in Ukraine). Uzhhorod is much smaller and more rural than Lviv. On one day, we went to Uzhhorod Castle and also Mukachevo Castle and we even saw people performing excavation work looking for relics from the past down in the layers of the dirt! I had never seen anyone do that before, and I loved it how they were still trying to discover more about their history.

We saw a re-creation of a village from a long time ago, and I learned that the people would often share their homes with their animals (think cows, horses, chickens)!

Next, we saw a synagogue that was changed into a theater after the war. At first, I was really confused about why the synagogue was changed into a theater, but then I learned that there used to be many Jews living in Uzhhorod, but after the war, most of the Jews were killed or moved, so there wasn’t much need for a synagogue there anymore. I think that the World Wars were two absolutely horrific and inhumane events. I thought it was unbelievable that they happened only last century when there were cars, airplanes, air conditioning machines, televisions, and WWII ended only 16 years before the first man was launched into space! There was also a concentration camp in presentday Lviv called Janowska that executed 35,000–40,000 people.

I also thought it is so fascinating how Ukraine is still changing borders. You know it has only been a country since the 1990s! We would talk to someone, and they would say something like “maybe this city will be part of Poland someday.” I was really confused at first because in the US, our borders haven’t changed in a really long time.

On the night before we left Uzhhorod, we walked into town to explore. The houses were run down but many grew their own food, had their own chickens, made their own wine, and had their own wells. Where I live, I feel like people take their nice houses for granted. There was chocolate called ROSHEN in every store because the current President of Ukraine, Mr. Poroshenko was the CEO of a Ukrainian chocolate company! I absolutely loved visiting Uzhhorod and Lviv because visiting them really opened my eyes to see much more than just Marin County’s little bubble. I am so excited to travel to more unusual and unique countries!

Yoohoo! We are now back in Italy, but this time in Rome! I am so excited to continue learning about Italy’s rich history, and to keep trying new and crazy things. It has been pretty difficult to switch into an Italian mindset, and then a Ukrainian one, and then back to an Italian one, but I am glad we are not missing all of Italy’s capital city.

First, we visited the Trevi Fountain, and I almost fell over because it was so GIGANTIC! It is one of the largest buildings I have ever seen, not to mention the fact that it was built in 1732! I didn’t even know that it was possible for a statue to be that big and beautiful. Just like in Ukraine, there were lots of street performers who did a variety of different things (there were people doing spray paint art about the Colosseum, a fire dancer, a mime, and many more performers.

The next morning, my family and I went to the Colosseum, where we saw where so many gladiators, tigers, lions, slaves, criminals, and animals fought. The Colosseum is absolutely HUGE (as is most of the stuff in Rome), and I was kind of (I mean really) creeped out seeing the underground area where animals used to pop up as a surprise for the slaves and kill them.

Gluten-free comparisons: Italy and Ukraine:

We took a GLUTEN FREE COOKING CLASS and made GF pizza and gelato – it was so fun and the chef was so careful about no cross contamination!  Mille Grazie!

1. Italy
There was so much good gluten free food in Italy! I was expecting to eat bars and fruit the whole time since Italy is famous for their pasta and pizza, but there were actually many restaurants that had gluten free options for people like me. I discovered a new favorite food when I was in Italy: caprese salads. I think that I had at least one caprese salad a day (I would even eat them for breakfast!!!) They are so delicious, yet so simple. Sometimes, I think that the best food is the really simple food with only a few ingredients, and no artificial parts or GMO, or anything bad for the environment or for yourself. On the other hand, I did eat enough gelato (maybe just a tad more than enough). Of course, it helped that during my trip to Venice we were on a river cruise that would prepare special dishes just for me to ensure that I could eat and not feel left out. Their food was so good! On the first night, they told us how they knew I was gluten free, and that they were aware of cross-contamination. When they brought out gluten free bread and pasta, however, I was pretty nervous, but sure enough, when we NIMA tested them, they had less that 20 ppm (pars per million-the threshold for celiacs like me), we knew that we wouldn’t have to NIMA test anything else on the ship.

One day, we went to a Michelin-star restaurant, and I was so excited because it was my first Michelin-star restaurant, and I had never eaten off of a tasting menu (mine had 5 whole courses!!!). At first, we thought that we wouldn’t have to use the NIMA at all because my family and I have realized that, in general, the fancier the restaurant, the more gluten free options they have and the more careful they are about cross-contamination. However, we were wrong. They brought out “gluten free” bread, but it actually wasn’t gluten free, and then they brought out more food, and when we tested one or two more foods, they had gluten too. We were all so surprised that a Michelin-star restaurant by the food capital of the world couldn’t prepare gluten free food to a safe standard for me!

Fast forward to Rome, and on our first night, we ate at a restaurant called Mama Eat Menù per Celiaci. We got pasta, pizza, and basically everything that would normally contain gluten because how often can someone with celiac eat those kinds of things? We tested them with the NIMA, and sure enough, they were all gluten free. We were amazed by how delicious they tasted, so we asked them how they made their food taste so good. They said that they used flour that had gluten, but then they de-glutenized it. I will have to look into this a little bit more, but it definitely tasted super good! They had an entirely separate kitchen/ovens for the gluten free customers! We LOVED this place! Go there whether you are GF or not!

2. Ukraine:
If you asked me to choose if I would rather eat the food in Ukraine or in Italy, I would choose Italy ” (just by a few steps). However, if you asked me to choose between the Italian restaurants’atmosphere and the Ukrainian restaurants’ atmosphere, I would by far choose Ukraine # . (Did you hear about the restaurant on the moon? Great food. No atmosphere. ……. Get it? No atmosphere.)

In Lviv, they are famous for crazy themed restaurants. You might be thinking “no way”, but every restaurant I went to had a really weird theme. On the first night, we went to a restaurant with the entrance staged like a regular man’s kitchen – the man opened the door when we knocked and he was in his bathrobe, cooking dinner. I later learned that they staged it like this so that unwanted visitors back in the day (it was a mason’s restaurant) would not suspect anything. Once we arrived inside, there was this bathroom with walls made of money (it was fake of course, but it was still really weird and funny). Also, it was named the most expensive restaurant in Lviv, but the thing is, if you have a special card, then you get the last “0” of your meal taken off (if you ordered something for 30 Hryvnia-the Ukrainian currency, then it would actually cost you 3 Hryvnia.) Fortunately, my dad got the special card, so we ate the most expensive foods off the menu, and it only cost us 40 US dollars (one US dollar is worth 25 Hryvni)!

Also, for almost every day in Ukraine, we ate filet mignon (because they were like $5!!!). Other themes included a dark coffee restaurant with a flaming coffee drink, a Jewish restaurant where you negotiated your price by doing a Jewish dance, a restaurant with a car on top of it, and a rainforest-like restaurant with a different theme at every floor (one had an enormous aquarium that actually took up 2 floors!).

It was really difficult to communicate with the waiters and waitresses because of the language barrier, so we heavily relied on google translate to know whether we were ordering a salad, a steak, or a dessert. I did have borscht, a traditional Ukrainian food, but I did not have Varenyky or any other traditional foods because they were not gluten free! The food was super yummy though, and even though it was a less popular place to visit, I highly recommend it! We felt safe and welcomed and entertained!

Early August 2018

Chee-Yun and Friends Concert:
I am so excited to perform at the musical concert with CheeYun, an incredible solo concert violinist who travels the world playing festivals and comes to San Anselmo once a year to help us violinists with our technique! This summer festival, I am playing Vivaldi Summer second violin (if you are listening to it and it’s crazy fast, you are listening to the right one), and it has been really difficult for me. I have worked on it every day (practice is from 10 AM until 5 PM), but I still haven’t done it perfectly yet. I wouldn’t call myself a perfectionist, but I get super mad and disappointed if I work really hard on something and I still can’t do it. I played pretty well at the concert, but there were one or two parts that I wasn’t too happy about (I was with a whole orchestra in the back of the second violinist section, so I am sure no one could hear). I was so happy with myself afterwards, and this just goes to show you that even if something seems impossible, practice it slowly and don’t try to do it so fast that you mess up all over the place. Start slowly, then work your way up while maintaining the important things. This isn’t just for music. This is for just about everything. So, if at first you don’t succeed, I know you will. If I can do it, then you can definitely do it.

Next month, I will tell you all about my beginning high school and if I choose to LOOP or NOT! Stay tuned! Happy end of summer all!