How a CGM could have saved my life
When I first thought about sharing this story, it had nothing to do with the cost of my Continuous Glucose Monitor (CGM), Dexcom. At the time this story happened, CGMs weren't used as they are now, and I barely knew what one even was. Though my CGM isn't WHY I'm telling this story, as I started to reflect on this I realized how connected the two things actually are.
My freshman year of college (about ten years ago but who's counting?), my A1C was the best it had ever been. It was sitting right around 6 or below, and both my endocrinologist and I were thrilled with my Type 1 Diabetes management. My blood sugars were quite steady, but often when I woke up in the morning my blood sugar would be slightly low. I was on an OmniPod at the time, and rather than adjusting my insulin ratios, I made a habit of keeping apple and cranberry juice in our small dorm room mini fridge and would have a few sips in the morning as needed.
The system seemed to be working just fine, and so I stuck with it!
Turn to the second semester of freshman year, my roommate along with a few friends of ours decided to go through sorority recruitment. We were at Boston University, which meant recruitment city style in a large hotel downtown rather than visiting sorority houses. By the end of it, most of us got placed into a sorority that was the "best" fit for us, and that meant we would be going through our new member period before being officially initiated as a sister.
On one of the first nights during my new member period, we had a gathering with our whole new member class and some of the older sisters. We were offered a Crystal Light beverage with a little bit of alcohol, we sat, were asked to tell stories, and then we all went home. I know, a very mild and unexciting story! Crystal light is sugar free so I didn't have to worry about a high sugar beverage, and we were told that there was alcohol in it so that wasn't a hidden surprise either. I had one drink, and that was all.
I went home and got to bed, knowing that I had plans to see my mom and sister the next day since it was a weekend and my family lived close by.
The next morning is when everything changed. I remember being half asleep in a bit of a haze and texting my mom and sister to say that I wasn't feeling very well and that I was unsure if I would be able to see them later that day. The rest of the morning, especially now ten years later, is only with me in small snippets.
What I do remember after the text message I sent to my mom and sister:
Sitting on my desk chair with a paramedic feeding me the chocolate peppermint truffles I had made at home and brought as treats for my friends, and my back being wet
Refusing to get into a wheelchair when getting out of the ambulance and making them walk me into the hospital
Waking up in a hospital bed, confused but with my family around me
Thanks to my family and friends from college, I was able to fill in some other pieces from that morning.
What actually happened is that later in the morning after I texted my sister and mom about not feeling well, I got up and out of my bed and told my roommate at the time that I was not feeling well.
I then fell to the ground and had a seizure. To this day, I don't know if she fully understands that what she did next literally saved my life, nor did I realize until more recently. Not only did she move me into a safer position (remember, we were in a small freshman dorm room) but she was able to call for help on our floor and get an ambulance. Our RA was zero help, but it didn't matter because the people who lived near us knew well enough that they had to get an ambulance there ASAP.
The paramedics came and I assume once someone told them I was diabetic that they realized this was all due to a low blood sugar, hence the chocolate truffle eating and they also gave me juice. I also have a vague memory of my OmniPod tubing coming out and insulin dripping down my back, which I assume was the paramedics doing as well to stop any additional insulin from going into my system.
They then tried to get me into a stretcher which apparently I refused, similarly to how I did not want to get into a wheelchair when we arrived at the hospital - even in this state, I still had the characteristics of an ultra crabby person with a low blood sugar ;)
The rest I'm unsure of, but I know my family arrived, my high school boyfriend took a train I think from Connecticut, and by the time I was awake and started to remember things they were all there with me. I remember the doctors asking me over and over again what I had done the night prior, trying to find a reason for this intensely low blood sugar. I told them, which was true, over and over again that I had one alcoholic beverage and that I had been commonly experiencing lows in the morning. I knew this wasn't a result of drinking, and rather it was my morning lows catching up with me.
Though it was so jarring to lose my memory of the morning, I am extremely grateful that I did. It was frightening enough without my full memory of the day, and I knew I was lucky to be okay though I don't think I realized at the time how dangerous the whole event was.
My endocrinologist adjusted my overnight basal rate on my OmniPod, I went back to school, and was completely okay albeit quite anxious about having another low like that.
I don't remember what year, but probably about five years later I was offered the opportunity to start using a Dexcom CGM full time. At this point, I was back to injections no longer on a pump and was not used to wearing anything on my body full time. Remembering back to this incident though helped me to make the leap and try out Dexcom. I knew that if something like that were to ever happen again, the odds of catching the low before it was dangerous were much higher with a Dexcom than without it.
The other reason I was able to have that choice in the first place was because my parents offered to pay for it, and there is no sugar coating that. I thought about the cost, but truly had no awareness of how much it would cost because they knew how important the device was and had the means to pay for it. My dad is also type one and had recently started the Dexcom (I think with this one he was the trendsetter).
As I mentioned at the start of this post, when I planned to share this story it actually had nothing to do with Dexcom or CGMs at all, never mind the cost of them. I realized though (probably after paying $1,400 dollars for a three month supply of Dexcom last week) that there was no way to separate the two. This very scary and scarring experience I had is forever linked to the technology that I now have access to.
Dexcom isn't perfect. Sometimes the readings are off, sometimes it stops working in the middle of the night because of an unknown issue. But most of the time, it alerts me to the highs and lows that I need to be aware of to manage my own health, both for potential long and short term impacts.
Technology like this should not be a luxury available only for those who can afford it. I do not over exaggerate when I say that Dexcom is the main reason I am able to sleep peacefully most nights and how I've kept my A1C in a comfortable range post college. One of the reasons I feel comfortable traveling on my own. One of the reasons I can confidently teach a yoga class, lead a meeting at work. I don't have an answer or a solution for this, but felt it was important to share this story. It is one I don't talk about often, and now when I think about it I will always think about how if I had been able to use a CGM of some sort at that time, I likely wouldn't have had this story to tell in the first place.