Diabetes, CFRD & Dexcom:

Glucose level: Above 600 😳!

A huge percent of CF adults form CFRD. Mine was formed as a result not only from pancreatic insufficiency (which is the organ that produces insulin in your body to regulate sugars normally) but because high doses of steroids are known to cause significantly high sugars.

I’ve suffered with diabetes now for 10 years but never stayed on top of it. There were days I’d prick my finger to take my sugar and like this photo, my sugars would be so high that a true number wouldn’t even pop up on the screen. Once your number reaches over 600, only a blood test from the hospital can show an accurate level.

For years, because of how difficult it is for CF patients to gain weight, I ate with no dietary restrictions. That included lots of carbs and sugar. In the beginning, high sugars felt the same as normal sugars, until things got out of control, my pancreas started struggling more than ever before and let’s face it.. I started getting older. Your body doesn’t bounce back to health in your 30s the way it did when you were 19.

When my baseline daily sugar started to run in the 300s, usually higher, my vision started to change. I felt tired, lethargic tired, all throughout the day. My balance was off so much I couldn’t walk a straight line on my best day. Having sugar well into the 3, 4, 500s, is so similar to the feeling of standing up after a few shots 🥃 and I knew I couldn’t keep pushing this aside. I’ve fought too hard for too long to go down to something that I could control with insulin, diet, and a little discipline.

When my endocrinologist suggested a dexcom, I had the same reaction as when my doctors suggested a port. There was no way I was going to have another device attached to my body for others to see.. to judge.. to ask in public why I’m beeping (dexcom hooks up to your iPhone and sends a signal to your phone when your sugar is high or low… it beeps… OBNOXIOUSLY LOUD)

I didn’t know then that on multiple occasions, my @dexcom device would save my life in the middle of the night.

So the dexcom is a small device that has a needle on one of its sides. I usually keep it placed on my upper arm but if I want it hidden I can pierce it through my thigh or stomach. The needle updates my blood sugar all throughout the day and connects my my blood sugar level to my iphone so I can constantly see if my sugar is too high, too low, or in range, at any time. A normal blood sugar level runs approx. in the 90s / low one-hundreds. I’m pretty sure the magic number to consider you a diabetic is above 200, but it’s concerning if it goes higher than about 150.

When my sugar was consistently running around 400/500+ daily, I knew my pancreas was failing (one of the most effected organs of Cystic Fibrosis). I also knew that because of my transplant I’m going to be on steroids (prednisone) for the rest of my life. Prednisone raises blood sugar, so this problem wasn’t going to go away.

Before agreeing to wear the dexcom device, I was pricking my fingers to see what my blood sugar number was nearly every hour. My poor beat up finger tips were covered in hundreds of little prick marks that would sting at the touch of a lemon, or hand sanitizer. Sometimes, my fingertips were so bruised and punctured, they would bleed if squeezed even an hour after pricking. After I agreed to wear the dexcom and skin-tape adhesive around it, pricking my finger became something rare. There was no need now. Each dexcom device/needle lasts for 10 days until it needs to be replaced with a fresh needle. I can shower with it- swim with it- basically do anything and not even remember it’s there (until it starts beeping, of course. Then everyone is reminded it’s there).

Ten years ago when I was first diagnosed with CFRD, the doctors said that unlike typical diabetics, my pancreas did still make insulin. Instead of being dead, it was kind of like my pancreas was asleep and couldn’t produce the proper amount of insulin that I needed to regulate my sugars. Presently, my pancreas and body are now insulin dependent.

Before I eat anything, I count approx. how many carbs I’ll be consuming at the time. I get ONE unit of insulin for every 5 grams of carbs that I eat. So, say I want a bagel in the morning. Usually my bagels are around 50 carbs. In comes the math 😖: 1 unit of insulin for every 5 carbs / 50 carbs in a bagel, means that I would administer a shot with 10 units of insulin into my blood stream to balance out the carbs from the food and help my body regulate the sugar.

Now, here’s the tricky thing about diabetes in CF and Post Transplant patients- nausea. Due to a lot of the medicines and treatments I do daily, CF and the digestive issues it causes, I throw up pretty often – here’s why it’s so dangerous. Insulin lowers your sugar. If I get those 10 units of insulin for that bagel, but then I end up throwing that bagel up, my insulin has nothing to use itself on and so it ends up bringing my normal sugar level down exactly as it would if it was working with food, except now it’s not. Thats when diabetes gets scary. The feeling of having an urgent low takes everything out of me. It’s like a phone battery draining and once it drops, it drops fast. If my level drops too low, it can be deadly. Personally, I think a low sugar is significantly worse than the feeling of a high sugar. It’s feels like all of the sudden the energy is being poured out from you. Dizziness, sweating profusely, mixing up words, unable to think straight, shaking, chills, a total body shutdown. There’s been times I physically couldn’t move my legs to make it to the kitchen for juice. When your sugar drops low, it can be a life or death situation. Your body needs sugar. Juice, honey, anything to bring that number up to stabilize you.

Living with diabetes feels like a seesaw. It’s all about balance and believe me when I say it is defeating sometimes.

There’s been a number of times I’ve gotten insulin after counting my carbs and either didn’t eat enough food for the amount of insulin I’d given myself, or ate the correct amount but was sick afterwards. On two occasions, I went to sleep with sugar in range. During the night, I’ve dropped as low as a little under 30, and it was continuing to drop. (The device tells you if your sugar level is trending downward or up). My dexcom app blared in my ear to alert me that I was scarcely low. It sent my sugar to my phone and continues to beep until the sugar is corrected. With a sugar so low, sometimes it takes every ounce of strength to get yourself something to stabilize your body. The good thing about my dexcom is that although it’s obnoxious, it’s effective. It’s usually loud enough to wake a partner or family member who can see the number for themselves just in case it became too low and the person with diabetes has passed out, which happens all the time.

I can’t help but think and be grateful for the world we live in today. Even though diabetes can be and still is very much a dangerous and deadly disease, I live in a world during a time where I’m able to track my sugar through an app on my phone! How incredible is that? From an illness where so many have lost their lives.. mine has been saved through technology.

Diabetes, no matter the type, is a heavy burden and it’s really tough. Fortunately, so am I and the entire diabetes community. Today & everyday I’m grateful that I can rest a little more peacefully knowing my Dex has my back.

Always feel free to reach out with questions or comments and as always, thanks for reading.

Sweet Sam 🍭