The “Why” of the RileyLink W² Case
I was diagnosed with type 1 diabetes just shy of my 31st birthday. I was suffering from the symptoms of keto acidosis and severe dehydration; I was vomiting, my mouth was so dry I couldn’t swallow, and for weeks I had been losing my breath when walking up the stairs, urinating frequently, and experiencing cramps in my calves while sleeping so severe they caused me to spring out of bed to stretch out.
I asked my fiancé to take me to the hospital the evening I returned from a business trip, I felt horrible. What I was surprised to be asked by the doctor after a blood draw was the question, “do you have diabetes?”, to which replied “no”. I, of course, was wrong. He then explained that my blood sugar was nearly 500mg/dL, and my Hemoglobin A1C, a measure of average blood sugar levels over the last 3 months was around 12% (a normal A1c would be around 4–5.6% for a non diabetic); meaning my Pancreas had stopped producing enough insulin to allow sugar to enter my muscles for the last few months, and I was experiencing symptoms of DKA. My body had been consuming fat instead of sugar to survive, and the keytones produced as a byproduct had now inundated my blood stream, wow. He explained I had Type 1 diabetes. They were going to keep me for a few days to rehydrate me and bring my blood sugar and keytone levels back to normal. It was a tough couple of days. I was so dehydrated the nurses couldnt get a vein to draw blood, which had to be done every 6 hours to check my ketone and potassium levels. I was getting pricked in the finger every 3hrs to monitor my blood glucose levels (this was foreshadowing for how life is as a diabetic). The potassium salt IV drip burned so badly we switched to a sort of potassium salt falvored drink. The creative nurse suggested mixing it with sugar free cranberry juice for flavor and I will say it was my drink of choice during my stay.
During my 3 days in the ICU, drifting in and out of jetlagged sleep, I had somewhat of an existential crisis. I felt so weak and frail at 30, I questioned whether the pursuits I had put so much time and effort into over the the last 9 years of my career were really what I wanted to do. I had been feeling so miserable the prior months, but now I know high blood sugar can influence and degrade your mood. But in one instance I dreamt that I walked to the whiteboard in my office and wrote “Help Others”. When I was jolted awake by another blood draw this salient memory stayed with me.
After being discharged I took two weeks off work to recover some strength and learn how to manage Type 1. Type 1 is like a big math problem, good news I’m an engineer, but seriously it’s a challenge even for me. You need to do a series of experiments with your doctor and diabetes educator to figure out how much insulin you need at a base level, how many units of fast acting insulin you should take when you eat a certain number of carbs, and how much your blood glucose will change when you take a certain amount of insulin without eating. Thank goodness for my fiancé. I couldn’t retain anything during our meetings with the diabetes educator and nutritionist, but she diligently took notes and kept me on track. I would also highly recommend the book “Think Like a Pancreas”, it helped me understand how to manage my diabetes immeasurably. Once you get that all worked out you have to learn how to count carbs, learn how certain carbs “act” more quickly than others (glycemic index), and how to deal with testing blood glucose levels and giving yourself insulin injections before each meal in a social setting.
Bolusing in a social setting was the thing I struggled with the most, especially when I went back to work. I didnt disclose to my coworkers that I had Type 1. Many people commented that I looked great since I had lost weight, they didn’t know why. The cafeteria at work is huge. I’d order food, count carbs, walk to the table with my coworkers, leave for the bathroom to bolus since I wasn’t comfortable doing this at the table, bolus in a stall, walk back to the table, and finally start eating. I’d sometimes go low getting to and from the cafeteria, and for the days I couldn’t find a table in the cafeteria the 10 minute walk from the bathroom bolus to my office with my food was like playing limbo with my BG. How low can you go?
Multi Daily Injection is an imperfect system. The state of the art is to use a long half life basal insulin like Tresiba and use a short acting like Humalog for meals. Tresiba is an amazing drug, but the issue is that if you are going to be active, you can’t reduce the amount of basil insulin being delivered in that instant. It’s already in your system. Resting I was fine, but anytime I was active or walked long distances I was going low. I was going low at work during important meetings and during times when I needed to think clearly. Having low blood sugar makes cognition strained since your brain runs on glucose. You have a hard time thinking, talking, learning, and remembering when you are low. You feel physical symptoms like shaking, and you feel angry and irritable since you can’t process information and requests easily. I remember being scolded by my manager after a particularly important meeting where I was low and didn’t have the information I should have. I was used to being a high performer, always on top of the facts. I knew he was right and I didn’t make excuses, I didn’t think he’d understand. It was too much to explain. On the way home from work that day I cried out of sadness and frustration, feeling like I was being defeated by something I felt I couldn’t control. But perhaps if I couldn’t meet my own expectations, I could still help others.
I was doing projects in my spare time to streamline life on multi daily injections. I designed a leather case for myself to carry 4 needles, and a hard shell case for my frio case to protect it in my backpack. I sent out surveys on forums to find out how I could help people with Diabetes but they were quickly shut down since I wasn’t immediately offering anything in return. I even got hateful messages from people who thought I should be more mindful of collecting names and emails for sharing future information on products I may have developed from their responses. The disease is at times so debilitating. My goal was to do anything I could do to help people feel more “normal”, or feel more comfortable with diabetes. I was searching so intently for that idea but I hadn’t found something impactful or useful enough, until I was introduced to Loop.
After a few months of assimilation to the new and burdensome overhead of daily management on multi daily injections, I discovered Loop after joining a diabetes club meeting at work. I was intrigued; closed loop basal control . This meant protection from lows, my worst enemy, by automatically reducing basil rate. A discrete way to bolus from my phone or watch while sitting at the table with my coworkers, this sounded like a godsend. No more long walks to the bathroom. I was so excited I immediately bought a developer account, a RileyLink, purchased some black market OmniPods, and loaded my first OmniPod using a Humalog Kwikpen. With Loop, I was amazed at how much of my attention I could focus back towards my daily life as opposed to diabetes management. I was experiencing less lows, I could function through important meetings, I felt myself getting stronger and regaining confidence in day to day activities.
That is when the idea came, the one worth pursing, something that could potentially help thousands of people experiencing similar struggles to my own, those whose life was forever changed for the better when they found Loop. After pouring endlessly over posts on the Loop Facebook group, I saw common themes — broken or cracked cases held together with duct tape, waterlogged RileyLinks, and I injected some aspirations of my own… Every one of my devices charges wirelessly, so why should I plug the RileyLink in every night? I had the know how to integrate all of these things. I was determined to give back to the community that gave me so much, that’s why I started work on the W² case.
Since being diagnosed with T1D I’ve entered a new paradigm in my life, guided by that jet-lag induced dream at the hospital to “help others”, and plan to be living this dream instead of DKA on my 32nd birthday.
