Focusing on Life with an Open-Source Artificial Pancreas
metabolism | other
Erzsi Szilagyi has Type 1 diabetes and in this talk, she shares with us her journey using the open-sourced artificial pancreas system called "loop." Since using this system, she has freed hours from her day that used to focus on diabetes management and is now able to focus on her actual life as a scientist, cyclist, friend and traveler.
Loop | Open APS
by Erzsi Szilagyi
Today I’m going to tell you about how I’m using numbers to deal with numbers less, so by focusing on life using an artificial pancreas system.
But first, I’m going to ground everything that I tell you about type I diabetes in the context of my life, because that is the context which all of this takes place for me. I’m a scientist, I’m a friend, I’m a cyclist, I’m a traveler. And while doing all of these activities I also have type I diabetes and I’m navigating that as I’m going along throughout these activities.
A few weeks ago, I was in Jordan and realized at one point while I explored Petra that it had been five hours since I had thought about diabetes. Five whole hours in which it hasn’t even occurred to me I was not thinking at all about diabetes. And I was able to do that because I am using an open source artificial pancreas system known as Loop.
Without type I diabetes a pancreas produces insulin. Those of us with type I diabetes ever pancreas doesn’t produce insulin, which means that we have to manage this aspect of daily life ourselves.
And in this case, this is a Rileylink, which is a key component of this artificial pancreas system that I’m using. And so, before I started using an artificial pancreas system, I spent a lot of time focusing on my diabetes. And now I spend a whole lot of time with the artificial pancreas system focusing on everything else.
The challenge of type I diabetes is not one that you get to deny. You don’t get to cancel that option, and the goal is to achieve a target blood sugar. Low blood sugar makes it hard to think, high blood sugars can be bad in the long term, so you are aiming for a really narrow sweet spot.
There are all sorts of factors that influence blood sugar. Food and stress causes blood sugar to increase. Insulin and exercise cause blood sugar to decrease, so you have to balance everything to try to achieve this target blood sugar.
The tool was in type I diabetes all center around insulin. Its delivery and monitoring blood sugar to basically say hey, did I get the amount of insulin that I needed right or not. Insulin can be delivered in the forms of syringe, insulin pump, and blood sugar can be measured by a glucometer or a continuous glucose monitor.
So, before I started using this closed loop system, I would get information right here this is me the brain from a glucometer and from a continuous glucose monitor. And then I would have to think about what’s happening and make a change in my insulin pump for the insulin delivery. So, every change that had to be made I had to do it intentionally.
So, this is an example of what it’s like to eat lunch with type I diabetes. Before I eat, I checked my blood sugar, it’s on range and on target at 109. A little while later I decide to eat. I’m going to eat 72 g of carbohydrate, take 5.5 units of insulin. Check a little while later, my blood sugar is a little bit high, but not unexpected because I’m eating food. And then a little while later I check my blood sugar, it’s 228. I crunched through the numbers and need 0.3 units of insulin, bolus that insulin and then I decided its time for desert. And those 15 g of carbohydrates I need 1.7 units of insulin.
And then about an hour later when I’m totally done eating, I’m really not going to have second desert, I checked my blood sugar again. It’s 209. Crunch through some more numbers and realize that I need 0.6 units of insulin.
This means over the course of four hours, and this is all the changes that’s been happening, I’ve checked my blood sugar four times, I’ve counted carbohydrates twice and I have delivered insulin four times. So I have a minimum of 10 interactions with diabetes, and those are all the changes that have been made to the system.
So in total with raising my brain to monitor everything and to navigate all of this, I was checking my blood sugar on average about 10 times a day, spending about 5% of my time with low blood sugar and a lot of my intention was on what my blood sugar was, and on making changes to optimize that.
But remember, what I really want to be focusing on is life. I want to be focusing on everything else. And so, I use a closed loop system on an artificial pancreas to be able to do that.
A closed loop system uses a lot of the same tools as the Erzsi system including a continuous glucose monitor, an insulin pump, and iPhone with a Rileylink that enables communication. So the way this closed loop system works is that every five minutes the continuous glucose monitor sends information to an iPhone that operates the computer, and it runs an algorithm.
It says hey, you need more insulin, or you need less insulin, and that change can be made to my insulin pump by using this Rileylink as a communication bridge. And as a bonus I can also send that data to a watch. So, every five minutes this system is happening. And if you compare that to before that was happening every hour, I was making a change, so this is 12 times more changes than the previous example.
So, what’s it like to eat a meal while looping?
So, this is the interface right here. At the start of the meal I checked my blood sugar. It’s right on target, right where I want it. My blood sugar is stable, it’s in range. It’s predicted to be stable and in range. So, I go down here to the little fork icon and say hey, I’m going to eat this many gram of carbohydrates, I bolus some insulin and I take that insulin to cover the food and I’m still doing a lot of the same things I was doing before.
But really what is key here is that the system in the background is doing a lot of work as well.
So then you can see my next meal I interacted with the system again, and remember that bonus of being able to look at the date on my watch. And in the interim I want to see how my blood sugar is doing or what is happening, I can just take a look at my watch and see what’s happening. It’s as easy as checking the time.
But really, the special source for this system is in the insulin delivery right here, and that’s this line, and you can see every time here when the system does something new, and it’s doing all of this while I’m going about my life. I’m not making those changes. The algorithm is saying hey, you need more insulin right here or hey, you need less insulin over there. And that is the key to this system.
So, because of using this system it means that I check my blood sugar less than once a day. I spanned 1.6% of my time low, and that’s a high average for that. But most importantly for me is where my attention is. My attentions, because I’m using this closed loop system, this artificial pancreas system is what I want it to be on. And by doing this I’ve been able to take diabetes for me in focus a lot of the times to now being out of focus. And spending a lot of time focusing instead on everything else that’s around.