How I Loop: Fewer Diabetes Interruptions at School
By Jamie Kurtzig
How Jamie Kurtzig, a high school student using a DIY automated insulin delivery system, manages her type 1 diabetes
My name is Jamie Kurtzig, and I am a high school student living with type 1 diabetes (T1D). I was diagnosed with T1D when I was one year old, and I have been working towards a cure ever since. I am so hopeful about T1D’s future because the Loop has helped to make my life so much easier!
My quality of life has been dramatically better on Loop relative to the pump I used to have, and I now spend only a quarter of the time I used to managing my diabetes!
For example, last year I asked one of my friends if she could tell when my numbers were low. She said that I looked paler and that my hands became shaky, and she also saw me take out my pump multiple times a day. In contrast, just a few days ago, another friend at my new high school was curious about what it is like to have type 1. She had never even seen my pump or my Loop app before, since I now bolus and see my numbers on my iPhone. Loop has made a real difference!
This is the next part of diaTribe's series on Loop, and if it is new to you, we recommend first reading Adam Brown’s take on what Loop is and why it matters. You may also enjoy Kelly Close's take on Looping benefits and unexpected turns!
As a reminder, Loop is an automated insulin delivery (AID) or ‘closed loop’ device, that automatically doses insulin, based on glucose readings from a continuous glucose monitor. AID devices are a new technology that can greatly improve glucose control and quality of life for anyone who takes mealtime insulin. Loop is an advanced ‘homebrew’ version created by a community of hobbyists - and is not approved by the FDA. For this reason using Loop has to be a personal decision. The Medtronic MiniMed 670G is the first FDA approved AID device, and we expect other pump companies to launch AID products in the near future. It’s definitely worth learning more about AID, since the benefits are so great.
If you are using Loop or thinking about starting, you may consider joining a new observational study that will be used to help with FDA approval. The study is completely electronic, very easy to participate in (Adam is also in it), and it really needs people new to Loop. Get more details here. Furthermore, Insulet’s Omnipod will soon be compatible with Loop, offering another pump option.
Click to jump to a section:
How has wearing a DIY system affected your diabetes burden, emotional state, or quality of life?
What has been an A-HA or WOW moment while wearing a DIY Closed Loop?
What is the most challenging part of wearing a DIY system for Jamie?
If you could wave a magic wand, what is the #1 thing you would change about your DIY system?
What is the #1 piece of advice you would give to someone considering a DIY closed Loop system?
What will it take for you to move to a commercial AID system?
Who do you think is a good candidate for DIY closed Loop? Who is not a good candidate?
Looper Name: Jamie Kurtzig
Years with diabetes: 13
Time wearing a DIY Closed Loop: 4 months
Set up: Loop app running on iPhone, Dexcom G6 CGM, Medtronic 523 Pump, Riley Link communication relay device
Coding experience: I don’t know anything about software coding, but my dad knows a lot about this
Q: How has wearing a DIY system affected your diabetes burden, emotional state, or quality of life?
On Loop, I spend only a quarter of the time I used to managing my diabetes. At lunch, when I had other pumps and devices, I would need to check in with the school nurse, check my blood sugar by pricking my finger, count all of my carbs that I would eat, talk with the nurse about how much insulin I should give myself, and then bolus with supervision. Now with Loop, I usually eat a lower-carb salad since it is so much easier (I have celiac too – how fun that I have two autoimmune diseases!) and don’t even take out my pump or my phone. When I think about it, I don’t even know if anyone would think I have type 1 diabetes if I didn’t tell them (which I do for certain people for safety). This is such a huge change from past years.
Loop is like a person who sits on your shoulder and tells you exactly what to do when it comes to giving a bolus. Other than this instance, Loop just does everything for me! The only thing that I have to do now is bolus for food and listen to its smart bolus advice! I really love this because at school most days, I have no interruptions.
Also, I love how the G6 Dexcom doesn’t require fingerstick calibrations. I hated checking my finger up to five times a day on previous Dexcom systems, and my fingers used to be really calloused from all of the fingersticks – every day for almost 13 years. With the G6, I think that I have checked my blood sugar about as many times in the past three months as I used to do in one day My fingers are really happy.
Last, my parents love that they can see all of my diabetes-related information on one screen from their Nightscout iPhone app. Data is power! Below is a screenshot of what they can see at any given time. It is a six-hour chart, but you can change it to see more or less data at a time. It shows you my active insulin, my automated basal rate, my pump battery life, my trends, a prediction for my future blood glucose levels (purple in the graph), and more! My parents can also see my bolus history (what I bolused and how much) by looking at the blue and white circle. Since my parents can just check on the Nightscout app, we barely talk about diabetes together. This is such a huge improvement from when my parents would text me about five million times a day.
Q: How has wearing Loop changed your glucose levels?
My numbers have been better – in particular, extreme high and low blood sugars are far less common. They were a little wonky while we changed the basals for the first month or so, but it’s gotten much better. At nighttime, when there are fewer variables, my graph often looks like a straight line at 100 mg/dl!
Below is a graph of my blood sugar numbers from February 8-my best day so far. I spent 100% of that day in my target range (80-150 mg/dl). However, this has been my best day in 90 days, so this is not representative of all of my days. I just wanted to show you how much automated insulin delivery is capable of doing. In the past 30 days, my average blood sugar was 131. My blood sugar numbers were in range for 85% of the time, high for 14% of the time, low for 1% of the time, and urgent low for 0% of the time.
Q: What has been an A-HA or WOW moment while wearing a DIY Closed Loop?
When I first started the Loop in September, it was terrible! My numbers would literally be a roller coaster. I would go down to 50 mg/dl and up to at least 250 mg/dl almost every day. I looked at the app every five seconds and started hating Loop.
One Friday after school got out, I plunged down to about 40 mg/dl. I had a ton of insulin on board, my grandma was texting me, my dad was texting me, and my mom was texting me. I didn’t feel well, and I had to sit down and eat glucose tabs and bars to get my blood sugar numbers back in range. When my mom picked me up, we talked about what had gone wrong.
I just had a salad and a cookie for lunch. I bolused 25g which seemed about right. But then, I remembered that my numbers were high earlier during the day and I had “faked carbs.” “Faking carbs” is when you tell the system that you are eating X amount of carbs, but you are really not, so the system will bring you down.
My mom and I agreed that I should never enter in “fake carbs” again. This “fake carb” bolusing had double-dosed me since Loop is already adjusting basal rates by itself. Since learning this lesson on Loop, I rarely see a roller-coaster.
My target on Loop is 100 mg/dl, with my normal basal ranging from 0.6 to 0.9 units per hour. My max basal is 3.5 units an hour which is about 4-6 times as aggressive as my normal basal.
Q: What is the most challenging part of wearing a DIY system for you?
The most challenging part of wearing a DIY system is that it sometimes kicks me out of Loop, and it is tricky to get back in. Since I am not a tech whiz, whenever I get kicked out of Loop, I click on the red circle in the top left-hand corner. It tells me what is wrong, and I can troubleshoot from there. I’ve learned that in most cases, if I restart all of my apps, turn Bluetooth off, restart my phone, and then turn Bluetooth back on, it usually works. If I have a problem with the RileyLink (the small device that allows the Loop app to talk to the old Medtronic pump), it helps to tune the radio frequency. However, there are some times when I just can’t figure out how to get back in Loop. As you can probably imagine, this is really frustrating, especially when I am in class, hanging out with friends, or trying to focus on something.
Q: If you could wave a magic wand, what is the #1 thing you would change about your DIY system?
If I could change one thing about the DIY system, I would change how big the Dexcom G6 inserter is. Look in the picture below to see how big it is compared to my hand. If they were smaller, I could carry a backup. Right now, I can’t carry one since it would take up my whole purse where I keep my diabetes supplies!
Q: What is the #1 piece of advice you would give to someone considering a DIY closed Loop system?
I would definitely advise you to find someone who you trust to help you with your system. This could be a doctor, nurse, a friend who loves technology, etc. Also, the more people you can rely on, the better. For me, my dad helps, and when he can’t figure it out, he has some techie friends and doctors and the Facebook “Looped” group. Even if you feel 100% confident in your ability to use Loop, there could be an emergency or something that you don’t know how to do. Finding a tech safety net is important since people using Loop can’t call a company for help on this non-FDA-approved device.
Q: What will it take for you to move to a commercial AID system?
For me, I would move to another system if it had even better corrections for my high blood sugars, an easier way to stay in Loop mode, and/or if it could automatically bolus for carbs. These features would be absolutely amazing and would revolutionize type 1 diabetes care.
Q: Who do you think is a good candidate for DIY closed Loop? Who is not a good candidate?
Anyone who is open to trying something new would be a good candidate. It definitely would help for either the potential candidate or their friends and family to be interested in or good at technology. Also, anyone who is ready to take their care to the next level should use this because it is sooo good at keeping me in range (especially at night). I would also recommend it for those who have healthcare providers who use this system or can help optimize it. I am so grateful that my parents know people who can help us!
I think that if you are someone who is extremely comfortable with your current system, then you should stay on your current system. Also, I would not recommend using this system if you are in an area with bad Wi-Fi and cell coverage and you want to have the Share feature enabled. The Share needs Wi-Fi or cell service to work, so if this feature is a main factor for you, then I would not recommend Loop.
I saw this sign at a gas station the day I switched to Looping. How funny!!!