A Pancreas for My Wife
Like all good stories, mine started a long time ago. One night, about 17 years ago, I met the one who is nowadays my other half. And under a strange circumstance, I learned that my partner lived with Type 1 diabetes.
When we were together, but not living together yet, I didn’t have the slightest idea of what Type 1 diabetes meant. Then one day, I had to learn (in a rather alarming way) what a hypoglycemic episode is. I just remember the faces of the people who were in the supermarket line in front of me when I asked them kindly to let me pay for a small juice box because it was an emergency. I can imagine, if any of them remember, I’m most likely the madman who urged them to buy juice.
Then I had many, many, many more hypoglycemic stories in my life. One of which was a not so “small” incident where I had to knock down the door of our apartment (for those who have not met me in person, I am very skinny). The neighbors thought that México was in a state of war. It was also my first time having to use glucagon on my wife.
That is an experience that with no doubt, I never want to live again. The impotence I felt was something I have never felt before. The sense of urgency was so severe. I didn’t think I would ever need to use glucagon. To think about it, still gives me the shivers.
Now with our CGM, it is harder for that to happen, but not impossible. Thanks to some great friends (those friends who become your part of your family), we had opportunity to get our hands on a Dexcom CGM. (Granted, we had to travel across the river (more like the ocean) to get such incredible and unequaled device.)
It was wonderful! I could finally know what was going on with my wife’s blood sugar without depending on a phone call, a text message or Whatsapp. My phone now sounded loud and clear when she was either too high or too low. It was the first step to something wonderful.
Before continuing, it should be clarified that I am a nerd (a.k.a. systems engineer), and am passionate about new technologies, programming languages, software architectures, etc. All those terms that, although important in this story, do not have to be part of this story because I accept, I will bore you.
Thanks to the marvelous cloud (another of those nerdy terms) I was also able to know at all times how Mariana’s blood sugars were. We’d discovered a great initiative called #WeAreNotWaiting which created something called Nightscout. It’s a website that uses that data that Dexcom sends to the cloud so you can access it from anywhere. Anyone would say, but if you already have it on the phone, why on a website, too? It turns out that this wonderful tool, besides displaying the information, also shows trends, allowing you to add events such as an insulin pump priming, how long it takes until a cannula should be replaced, if there was any correction of carbohydrates, etc. In short, a daily log of treatments for people with diabetes.
We were happy then, because in addition to Dexcom, we could save so much valuable information to take care of this pain called diabetes. We were so happy, or so we thought.
Wanting to be part of the #WeAreNotWaiting movement we became, like all good nerds and Community Manager (Mariana), to tweet our success in implementing Nightscout. We were (or at least we believed) the first ones in Mexico to have this great tool available. That’s when, now a great friend and colleague, Gustavo asked me in a tweet, “Do you already know OpenAPS?”
I did not! After reading more about what OpenAPS was, it became my goal. An OpenAPS is an automatic insulin dosing system, which based on the parameters set in the insulin pump (minimum and maximum goals, insulin ratio carbohydrates, duration of active insulin, etc.), the pump makes the necessary adjustments to always be in our target range. Our goal No HYPOGLYCEMIA!
So without knowing Linux (the base operating system of OpenAPS), we decided to start the implementation. I was a Windows fanboy, I had no idea about Linux, so I asked one of my best friends, Fabrizio, to help me get everything up and running. (I know that had it not been for him, it would have taken centuries to implement this.) Thank you, Fabz!
The longed-for day arrived, and we were able to communicate with the insulin pump with a device called Raspberry. We screamed, we laughed, we were so excited that we had a beer to celebrate it. And after so much noise, we continued with the implementation.
I must say that I have spent countless nights (to date) implementing OpenAPS. Through updates, adjustments, battles, I’ve had the desire to throw the Intel Edison into the trash. But every time, I return and continue making this work, so at some point, it will be a true artificial pancreas.
OpenAPS, Nightscout, and Dexcom changed our lives. Gone are those nights of anguish and sleeplessness for trying to correct hypoglycemia or hyperglycemia. Gone was that anxiety we suffered when we were away from each other, not knowing what could happen if I was not available to help my other half. Gone are those days of fear when, on leaving for work, my son (my other reason for living) was awake and ready enough to help his mother in case of an emergency, without me being able to help them immediately. These three systems have returned us the peace of mind, the tranquility and the best, complete nights of sleep. No worries, no fear.
Every night of care that I take to improve the interaction of all these devices is worth it. Knowing that my wife will be safe, at least on the subject of diabetes, for me is the best I can do. (It should be clear that the nerd part in me is having fun doing this also, and that I would love to help more people find that peace that I have found.) Every day I can think of something new to help the community; I work on several projects of this type (although they are all not done). I would love to share everything that Mariana and I have achieved.
My main impulse was to help my wife, and my desire was that she be safe. No, we do not wait impatiently for a cure, because we know that it is (I touch wood) light years away. But, we will use all the tools that are within our reach to improve our lives, living with diabetes. That’s how I include myself, not because I live with diabetes, but because I love someone who does. I believe that my nerd powers, provide a little help so that we can be more relaxed.
What led me to do this? The love for my family, the love for my profession, but, above all, my love for Mariana. I just hope she’s as happy about this as I am.
I want to thank Mila, Jimmy, the sweet warriors (you know who they are), Gustavo, Fabrizio, the whole community of #WeAreNotWaiting and #OpenAPS (Dana, Ben, Scott) for helping Mariana and me, to make living with this condition somewhat easier to manage. You are all a vital part of all this adventure and history. Without you today, I would not be writing this story at 11:00 p.m., with one eye on the cat, thinking of how to avoid asking permission to buy a small emergency juice box.