To Pump or Not To Pump
The emotional negotiation I made with myself to switch over.
We had been on MDI (Manual Daily Injections) for 10 weeks since Jolie’s diagnosis. Keeping her between 70-85% TIR (time-in-range) required backbreaking effort and focus with many sleepless nights and heart racing days. Keeping her in range meant that nearly all meals were “blood sugar friendly” (i.e., long, slow acting carbs) and meticulous split dosing for the occasional and unavoidable less BG (blood glucose) friendly foods. All of her meals/food, insulin doses, timing, and BG reactions were tracked in an app for reference and analysis. Calling Jolie during math class to remind her to drink water as her BG soared above 200 or calling her to eat 3 grapes during recess to prevent a near-low was not uncommon. I have a vocal imprint of her strained quiet voice answering my calls during school hours (likely hiding under the table during quiet study time) “what Mama?!?!” or calling our beloved school nurse Sandra pleading with her to “please, please correct Jolie even though it’s only been an hour since her lunch dose.” These were regular occurrences.
Not only was keeping Jolie in range via MDI disruptive for Jolie, it was a Herculean, all consuming effort for me. I kept the Dexcom Follow app open ALL DAY LONG, during yoga classes, pilates, movies, phone calls, restaurant meals, bill paying, cleaning, driving, etc. It was (and still is) utterly relentless because interventions require what seem to be an ad infinitum of detail management. How much insulin is on board? When was her last meal? What is still burning? What’s the meal upcoming? What was her activity? What will be her activity? This fluctuating mass of ever-changing data allowed me to make reasonably confident split second decisions and relay them to Sandra or Jolie. When she was at home, the management continued similarly but with somewhat less anxiety as I was more in control by virtue of her proximity.
I resisted the pump and I wasn’t sure why. Several of her diabetes educators at NYU have T1D and tout their pumps. I even glimpse at their 95% TIR stats and fall off my chair. Yet, I resisted. I resisted because the pump was another ‘robot part’ that would remind us all, not just of her dependence on insulin, but the pump felt like a step in being BEHOLDEN to technology to deliver that insulin. Even though the pumps were durable yet built for precision and ease, I was getting used to the clunky pens with their grossly imprecise 0.5 increments. I recognized that part of the ‘allure’ of MDI was that the pens made Jolie’s diabetes less visible; more invisible. The pump affixed to her body would further reinforce ‘our new normal’ and our reality - that our pre-diabetes life was gone forever.
Another form of my resistance was of course the learning curve for new tech and all of the new systems and routines this would bring into our life. We had barely gotten any mastery from MDI but I at least felt that we had gone through enough trial and error (read: total fuck ups) that we had the hang of it. Going from MDI to the pump felt like having Irish twins. Just when you’re out of the woods of newborn living; you do it all over again!
I knew the pump I wanted (the Tandem Mobi for reasons I will get into in another post) and had it ordered and sitting in the closet for over a month. Our doctor and diabetes education team was urging us to get it going and assuring us that utilizing the tech will be a better outcome for Jolie (aka, increased time in range), and of course would be less labor intensive for us because “the pump does the work”. But, the idea of figuring out such a specific and precious tiny computer AND that this tiny computer could possibly fail resulting in DKA or a fatal low made me hesitant. Oh the agony of perseverating over “what if’s”. I was no stranger to outsized risk assessment and subsequent worry - if I evaluated every single risk I wouldn’t drive on highways or walk by myself in NYC at night; but I do both of those things because the risk is relatively low vs. the reward of those activities.
My wavering around implementing the pump encouraged too many Reddit deep dives. The takeaway there is that you can find support and rationale for any decision if you spend enough time on Reddit. There were T1D adults living with it for decades who swore by game changing tech advancements. As if to say to their dinosaur MDI peers, “DUH, of course you use the very best automated insulin delivery and most current life enhancing technology!” Besides, who wouldn’t trade one site injection every three days for 18-24 injections every three days. The engineers and scientists on the threads appeased my brainy side. However, my heart led side (perhaps the side of me still mourning the loss of our pre-diabetes life) didn’t want to rely on another piece of equipment and resonated with the T1D adults who stuck with MDI because it felt freer. The MDI folks didn’t want more adhesives, site fails, and strict and careful management of more equipment. All risk aside of dumping insulin or not administering insulin and wreaking temporary havoc, the notion of being reliant on a visible piece of equipment felt like a step towards overall acceptance of the condition that perhaps, after only 10 weeks, I just wasn’t ready to face.
What pushed me over the edge to switch to the pump was a 22-year old woman diagnosed 9 months prior who I met at a T1D parent event on the Upper East Side on a cold November morning. Not only was she running the NYC Marathon that upcoming Sunday, but she couldn’t keep her enthusiasm for the Mobi contained as she freely bolused croissants and fruit by typing estimated carb counts into her phone. She expressed that “I eat everything I want” and flashed her 95% time-in-range stat to me. Her reality vs our strict life of BG friendly foods, methodical pre-bolus timing and vigilant carb counting felt impossible to reconcile. THIS is what the pump can do?! Above all, she was healthy, fit, unstressed, vibrant and happy - all things I desperately wanted for myself and of course even more so for my daughter. I left that meet-up and messaged our diabetes team while commuting home that we were ready to move to the pump. Three days later (and three hours of education later) we were up and running.