The Reality of an Infusion Set Change With CF-related Diabetes
A columnist narrates the mundane routine involved with diabetes management
The rain comes down hard. From my bed I can hear the wind stirring up leaves with its warm air and white noise. Even though it’s morning, it’s not bright. The Omnipod on my arm, my insulin delivery system, beeps its loud and obnoxious tone, letting me know it needs to be changed. The beeping is high-pitched enough that it wakes me from sleep.
I’ve talked vaguely before about frustrations surrounding my cystic fibrosis-related diabetes diagnosis, but I don’t often talk about the reality of living with this second set of complications. If I’m being honest, which has always been my priority in this space, dealing with the mundanity of my diabetes is maybe the aspect of my daily disabled life I resent most.
I want to pause and clarify that my frustration doesn’t negate how thankful I am that science and technology have evolved to the point that I can ditch four daily insulin jabs in favor of a more cyborglike lifestyle. I’m proud of the technology that keeps me alive.
But sometimes when I change my infusion set, it hurts so sharply I scream. This happens more in my hips than my arms, so I prefer to put my pod on the back of my arm, in the place with the most fat. And because I have cystic fibrosis and don’t retain fat and weight easily, that means there isn’t a lot of surface area to work with. So I have to rotate to my hips, whether I like it or not.
Once, at a friend’s house, my pod finally flatlined, causing it to let out an unending mechanical howl. My friend’s wife came running out of their bedroom, eyes wide with fear.
I pointed to the device, which was on my hip that day. “No, it’s OK! It’s just me!”
“Oh, my God!” she said with a laugh of relief. “Your fire alarm is going off!”
If I’m lying on the pod when it dies, the sound muffled, sometimes I can sleep through the initial screaming. But the programmers anticipated this; if ignored, the sound will stutter, ultimately catching my attention.
The pod — a small, thin, plastic computer of sorts — has a sticky side that adheres to my skin. It holds in place a catheter that sits just under my skin and needs to be changed every three days.
I roll over and reach for my Personal Diabetes Manager (PDM), a wireless device that tells the pod what to do via Bluetooth, and I click the button on the side to wake up the screen. I usually tell the little “backpack,” as my mom calls it, to give me a dose of insulin when I eat a meal or need to adjust for high blood sugar levels. Now, I tell it to silence and deactivate the pod in my arm.
The latest version of the PDM is a device that looks to me like it must be an old phone shell, complete with a defunct camera on the back. I’ve recently found that if I leave it in airplane mode, I can go about a week before needing to recharge it.
I’ve been using the Omnipod system for so long that I can’t remember when I switched over from an older version of the Medtronic MiniMed pump system, a small, pager-looking device that connects the insulin reservoir to the body with a cord.
Instead, the small Omnipod device holds the insulin against my body. I follow the menu steps to change the pod, promising myself a small treat — half an hour of video games or a small scoop of ice cream (which I will, of course, take insulin for by counting carbs). The pod primes itself. Not having tubing means less insulin waste. I never have to see or remove a needle, a small relief given my intense needle phobia.
The PDM prompts me through a series of menus. I count the ticks as the pod counts down to the small pinch of the catheter being inserted. I’m in the clear for three more days.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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tom harper
Hi there! Interesting reading your story.. I connect with you two ways - I am a retired physician who practiced for 40 years in allergy and immunology. My research in Denver was on how nutritional problems in CF contribute to immune problems. I have kept up with the CF literature. Also I am 56 year T1D who has had 5 insulin pumps since 1997. Currently have Medtronics 770G with Dexcom G6 CGM. Have not had Omnipod but have heard good things. My infusion sets with tubing are very easy to insert and are almost painless. Same with Dexcom CGM. Dexcom has just released G7 CGM which is even easier and ditches the separate transmitter. I can really empathize with your suffering and pain - have been there. Hang in there! Its beter than the alternative.