Today marked another important step on my path to pumping insulin: my “Pump Start” class. After the missed calls, returned calls, triple-verifying that this was the next step in the process, the quadruple-checking that I still have the right order of operations to get me to the point of everyone in my medical team recognizing that I’m ready to put insulin in one of these t:slim cartridges – according to their standards. Today was the day. And then…
Here’s how the first 20 seconds of my appointment went down:
Them: “So we’re going to review your diabetes management today. How many times you’re checking your blood sugar, things like that.”
Me: “My referral says Pump Start, I thought that’s why I was here today.”
Them: “No, this is just an evaluation.”
Between the disappointment, anger, confusion, and frustration, I’m not sure which emotion the CDE I was meeting with could interpret first, but they were all there.
Before I get into some of the details I remember from this morning, I feel like a pseudo-disclaimer is in order. What happened today was a case of mismanaged expectations. Having the referral (which I learned was never supposed to be in my possession – weird) clearly and succinctly state ‘Pump Start’ meant I was prepared to talk about my insulin pump, what to expect, and what I can do between now and the day I start insulin to ensure my initial settings are as reliable and safe as possible. If the referral was amended to say something like ‘evaluation’, I wouldn’t have had the same expectations. Sure, I probably would have been let down by what I got, or didn’t get out of the class, but at least I wouldn’t have expected the moon. Instead, I got
It took some carefully phrased questions to get to a conversation remotely about pumping insulin by the end of my 40-minutes-of-a-scheduled-2-hour appointment, and even then I didn’t get many concrete answers. Using the data gathered from the past two weeks of charting, the CDE went through some rudimentary calculations that seemingly came out of nowhere to come up with a baseline insulin/carb ratio [ 500 / Total Daily Insulin Dose] and baseline correction factor [1,800 / Total Daily Insulin Dose]. If anyone reading this knows where that 500 or 1,800 came from, I would appreciate a proper citation. It didn’t help that the numbers that resulted from those equations seemed significantly off from anything I would consider a proper configuration for my insulin pump – at any time of day.
When I asked for a procedure to follow to help address problem areas in my diabetes control as I identify them, I was met with a lot of words that didn’t exactly instill confidence in my instructor. Most notably, the word ‘maybe‘. As in “if the 6am-10am time frame is off, maybe we can change the basal rate. Maybe we will look at your insulin/carb ratio.”
“As the patient, sitting on this side of the table, hearing the word maybe from you, the medical professional is concerning.” Right now I need an order of operations. Right now I need a flowchart filled with binary choices. Right now I need something more definitive, more concrete than maybe. I’m sure as I become more seasoned with pumping I will be able to more easily recognize which insulin pump configuration needs tweaking first, second, third, and so on. But despite my confidence and assertiveness, I need help right now. I want to learn everything I can so I’m as prepared as possible for the big show. Insulin is scary stuff if it’s not respected, and I don’t have time for maybe’s when my life is potentially on the line.
I wrote down some thoughts after I left my appointment, as my head was naturally swirling with all kinds of one-liners.
- As expected, blood glucose meter data is more definitive than CGM data when it comes to making changes to my pump settings. Yes, the CGM graphs are helpful, but everything has to be confirmed by a meter. Testing will continue to be key in these first months.
- Data collected while I’m pumping saline seems to be largely irrelevant to the configuration of my insulin pump. Since I’m not actually taking the pump’s basal, and I’m not taking the pump’s extended boluses, what good are the blood glucose results? How can I configure my pump properly if the data I’m collecting before hand is based off an entirely different diabetes management scheme?
- Recommendations for pump configuration changes appear to vary from CDE to MD to CDE. Some will be more cautious than others changing basal rates by .05 units compared to 1.0 units. Others will make more aggressive recommendations, surely a factor of comfort with their patients and their grasp on pumping insulin. I’m not concerned one way or the other, but it’s interesting to see that there is no hard and fast rule when it comes to adjustments.
Despite the frustrations, I’ve come out of this further convinced that this is the right time for me to switch to an insulin pump. Diabetically speaking, I know this is the right way to go. And as someone who gets on a soapbox from time to time in the name of patient’s rights and speaking up when necessary, I’m glad I approached this morning with enough patience to ask enough questions until I was satisfied and question as much as possible. Questioning your doctors is a healthy practice. If I’m not asking questions, that means I’m not paying attention.
So, even though my morning ended like
my day did end on a more positive note…
Sing it, Adam.
Have a nice weekend.
4 thoughts on “How Many ‘Disappointed’ Gifs Can I Put Into One Blog Post?”
Glad to see you got the pumping insulin book. It answered more questions for me than any CDE ever did. I think it even has the explanation of the 500/1800 in it (at least my decade old copy does).
I’m sorry it was so disappointing. I could totally relate if I had seen “Pump Start” and they wanted to talk about hypothetical anything. I didn’t start pumping saline because my Doctor agreed “it has no relevance to real life settings”. Hopefully your team is one that listens to you and kicks it into gear a bit. Happy pumping!
Every time I read of pump start marathons such as you are experiencing, I give thanks that I didn’t have to do a saline trial or attend any classes. I did a few weeks of charting and was given some preliminary rates to work with. I did spend an hour or so with the pump CDE to go through the pump manufacturer list of training topics. Yeah, I did screw up the first infusion set change and maybe even the second. But when you have had diabetes for a long time, this is not rocket science. My initial settings were all wrong and after about a week, I quit asking them for advice and got them straightened out. They usually use very conservative settings to start and I was one of those people who actually uses as much insulin on a pump as I did with injections. Many people go down to 80% of their former dose and that’s why they started my rates so low.
Eventually your real pump start will happen. And I suspect that you’ll finally get everything working well. If you can’t figure it out, I think you know someone else on a T:slim who can give you some guidance….
Wow…what a mess! Is this all being orchestrated by Tandem or by your endo’s office? It seems they’ve got some room for improvement. But kudos to you for speaking up and not wasting two hours talkihg about elementary BS.
These classes are through my endocrinologist. Clearly, I’m a patient patient through all of this.