Welcome to our JDRF Bay Area blog series, Diary of an Artificial Pancreas, written by 12-year-old Jamie Kurtzig. Each month, she will share 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
I am so excited! Today I am going to London! It is my first time ever going to England and I am really looking forward to it. However, I was also a little bit nervous because this was my first time flying in a plane since the last time my pump malfunctioned, and this time I will be doing it for 10 hours! If something malfunctioned, we might not have had a working pump for the whole rest of the trip. Of course, we learned to bring back up syringes and everything else in our carry on’s, so we are safe, but the pump really does make life so much easier. As usual, I asked for hand pats in the San Francisco security line and all went fine. Nothing was confiscated – including all of our gluten free food and drink we travel with too – not even our way more than 4 ounce peanut butter! It must be my lucky day! I love peanut butter and gluten free crackers for flight snacks! Thankfully, the flight went smoothly and nothing out of the ordinary happened.
So, the plane flight was a very good one because my pump worked perfectly…… and I could watch a bunch of movies and they even had a personal charging station so our electronics could stay charged the whole time – Virgin Atlantic Dreamliner is awesome!
Since I have only internationally traveled once before this trip, I am not really an expert on when to do the big old time change business. So, we agreed that we would just do it when we all “woke up” at whatever time that was. Seemed to go ok overall – the first day or two of the international (big time change) trips are always a bit tricky for the 670G since I am kicked out of Auto mode a lot for those 2 hour safety limitations – too high or too low for more than 2 hours without an intervention – while my body is adjusting to the new time and schedule and routine. It is not that bad though – if we set our expectations that the first night or two are not that smooth. Of course, I’ve also learned to silence my alarms as well so I am not woken up when I am sleeping in a hotel room with my parents either – yay! They did look tired at wake up today.
Harry Potter World here I come! I am the hugest fan of Harry Potter ever, so I am so excited for today when we go to Harry Potter World – or maybe that is just what I call it! Unfortunately (but fortunately – keep reading), I was out of Auto mode when I woke up (must have been one of the 2 hour infractions while I am still adjusting to the time change or because we went too long without calibrating/entering a bg possibly?). When I went to bolus for my breakfast, “Bolus Wizard” appeared as a choice on the main menu!!!! I was actually really lucky to not have been in Auto mode this morning because when I am in Auto mode it only says, “Bolus”. I thought that this BOLUS WIZARD option was a sign proving that I was a wizard for today at Warner Brothers Studio – home to Hogwarts School of Witchcraft and Wizardry! “Jamie the Bolus Wizard” sounds pretty sweet!
Now, you might be wondering how eating gluten-free has been going in London. It actually has been going really well. I have always wanted to try Britain’s famous fish and chips and tea treats. But, those things usually aren’t gluten free. So, I was surprised and excited when I went to Indigo restaurant (a gluten and dairy free restaurant at One Aldwych!) and they said that their fish and chips were prepared gluten-free. They said that they fried it in a separate frying pan and everything. I don’t think I have ever been able to try something fried in a restaurant fryer since I gotdiagnosed with celiac a couple of years ago. We NIMA’d it too (the verb form of NIMA) and sure enough, they were gluten-free! Also, I went to tea at the Ritz (ooh la la! – a big splurge!) and after they nearly turned my dad away for not being dressed fancy enough, they brought me out my own assortment of enough gluten free tea sandwiches and desserts for my entire family combined. The tea sandwiches were amazing and the desserts were just sooo delicious! My family and I were so impressed that they went to all this effort to be ready for me (we made the request a couple of weeks in advance) and would do all of that just for me! It made me feel so special. No one at a restaurant had ever really done something that nice and thoughtful for me and it brought tears to my eyes. If you want a gluten-free, once in a lifetime London tea experience, go to The Ritz in London!
No! I am leaving London today. I had such a great time here and I don’t want to leave. I was at Heathrow Airport, going through security like I always do, and they asked my mom if she had a doctor’s note saying that I had a medical device that could not go through the machines. We did not have one (another item to NEVER TRAVEL without – we should know better by now!), and they gave us a lot of trouble at security. I’ve since heard the Heathrow is the WORST at security restrictions and hassles for families. Plus they confiscated my peanut butter this time! It is so weird how the different airports have such different rules at security. For example, we had a bunch of our stuff in 4 ounce travel bottles (U.S. travel rules) for our liquids and in London, it needs to be LESS THAN 4 ounce bottles! Who knew? Not us! I hope that the letter that we are getting for next time will make the security check easier. I will keep you posted. My next international trip is June.
Sunday, March 5
Today, I went to the CarbDM event in the East Bay and I was one of the members of the panel at the artificial pancreas talk. My main takeaways from this panel talk were that 1) there are many different types of “artificial pancreas” systems out there being worked on (this is so exciting!) – not just the one that I have – the Medtronic 670G and 2) artificial pancreas is not really the right word for my pump – it should really be called a “basal rate modulator” since that is the best way to describe what it actually does. In addition to there being the Medtronic 670G closed loop artificial pancreas, there was also Ed Damiano’s bionic pancreas, talk about the BigFoot Biomedical artificial pancreas (our super smart friend runs this company and is making amazing progress), and a few others. It was fascinating how I could hear what other participants in these clinical trials thought about their experiences with the device, what the ups and downs were of each system, and how all of the devices worked differently. I also really enjoyed being on the panel and answering everyone’s questions. If you ever get a chance, you should come to a CarbDM event. I even got to see a girl from my middle school that was recently diagnosed and also a family that I went to Kindergarten with that was diagnosed a couple of years ago as well!
TGIF – Thank God its Friday! Today I had a big party with all my friends at my house. Seven of my friends came home on the bus with me and we had a great time hanging out at the trampoline, eating and playing board games. We did this for hours and hours and I was having so much fun that I forgot to pay attention to my pump alerting me of AUTO MODE EXIT. It likely kicked me out of Auto mode this time because I was receiving the minimum basal amount for 2 hours. The system gets out of Auto mode when you are too low or too high (it is an algorithm) without action for 2 hours. So, while I was playing Telestrations (my favorite board game!), I got really low. I didn’t want to stop playing with my friends, so I continued along without treating the low. A few minutes later, I started to feel really low, so I went over and had the glucose tab I should have eaten a while ago. All was well again, as my blood sugars were rising, until dinner time. Since I had quite a few friends over, we ended up eating high-carby party foods like sushi, pizza, and s’mores – all gluten free of course since I have celiac disease. Not only are these foods super high in carbs (and even more difficult to bolus for than NON gluten free same food), but again, I was having so much fun with my friends that I forgot to bolus. I was fine for a little while since the foods I was eating were more “long acting”, slow digesting foods, but then the food started to kick in. My mom was looking at my blood sugar and she saw that I was high-and rising fast. She asked me if I had bolused, then I said no and gave like 4.5 units (a lot for me at 85 pounds) or something. I drank a lot of water too because water can help reduce blood sugars more quickly if you are high. Before the insulin took action I felt really bad, because I felt bad about not taking very good care of myself while my friends were over and also because I was suffering the punishment of not bolusing. After a little while, I was okay, but I did have a bit of a rocky blood sugar night. Traditional pizza is usually tough to bolus for and add in gluten-free rice or corn crust pizza and the fact that you cannot combo bolus with the 670G, and it makes for a rocky night in and out of Auto mode – mostly out! Next time I have so many friends over, I will try to not forget to treat lows or bolus for food.
Today I went to my friend from Tae Kwon Do’s party. My friend is my age and has autism. I met him 4 or so years ago when he started training at our studio. I really appreciate him for so many different reasons – he is kind, he is smart, he is funny, he is honest, he lives in the moment. Being around him also makes me realize that having diabetes has made me a more compassionate person. Because I have diabetes, I feel like that makes me able to show more love to others with other medical conditions because I am not afraid or uncomfortable with medical differences – since I have had them my whole life. Though my friend with autism has more challenges than most, he has an amazing ability to see through to the heart. He can tell who is kind and who is less kind and who is comfortable with him the way he is and who is not yet. He surrounds himself with those who accept him and appreciate him for who he is. I am glad to be one of these people. I think that since I have diabetes, it has made me more aware of the type of person I want to be and also has helped me see through to the most important part of a person: their heart. I do not want people to be afraid of me because I am different in this way – in fact, I am proud of my differences and I do not even like being “normal”. I think Unique is a great way to be!
I was kind of worried that I would have a rocky day of blood sugars because of the time change, but really, nothing of importance happened in terms of the logistics around the time change.We just have to remember to change the meters and clocks and pumps and all like everyone else. It is easy to do.
Today, a newly diagnosed family with both diabetes and celiac came over to my house to learn more about life with these conditions. The girl with diabetes (age 11) asked me some really good questions that I found really interesting. The one that stood out to me was: Does everyone in your class know you have diabetes, and how do you feel about it? I responded that yes, everyone in my class knows that I have type 1 diabetes, but it doesn’t bother me. I actually think that it makes me stand out from the crowd. Without getting diagnosed, the JDRF would be one million dollars behind what they are today (my family and I have helped raise over $1 million for the JDRF over the last decade). I would also be less good with numbers, eat less healthy, and like I said, see less to the heart. The message that I try to send to my peers is that even though I have diabetes, it is not stopping me. I am a black belt in Tae Kwon Do, a good student, a kind helper, and a good friend. For her, she had lived for 10 years – free of diabetes, so these recent diagnoses were a big change, and she felt that it was something that should maybe be kept a secret. This is why I like being and ambassador. I like to help newly diagnosed families get their lives back on track. I like showing kids that living with diabetes has no limits – that they can soar and be free to rise up to their full potential.
Having type 1 diabetes is nothing to be ashamed of in any way – ever.
Today, I did a superhero run in San Francisco and it was super (get it?) fun! (My favorite costume was a poop emogi running with a cape!) I feel like many people with type one diabetes do not realize that they can continue to live their lives normally and thrive and be super. I think that this is really sad because no matter what, everyone needs to live their life to the fullest. Many people are too afraid to spread their wings and see what they are “cape-able” (get it?) of. My mom always says everyone falls down, but what matters most is the getting back up part. Superheroes always get back up. Sometimes I feel like diabetes knocks me down, but I will always rise. Look what we folks with diabetes manage every day – everyone with diabetes should believe that they are the superhero they are.