Monday, December 5, 2016

Taking A Break From My Insulin Pump.

I really don't know how to start this, because I have these very strongly juxtaposed feelings of "I am so over my insulin pump and all of its needs and now I'm having a blog name existential crisis" and "I am so lucky to even have an insulin pump and why am I complaining about this". So let's just start right off the bat with me saying that I recognize how #firstworldproblems it is to be tired of such an amazing, and for some inaccessible, medical device. I get it. Privilege, checked.

2005 was the last time I was on MDI (multiple daily injections), which means I continuously wore some version of an insulin pump for 11 years before taking my first pump break. There were a few things that contributed to my decision to shelve my t:slim after almost 3 years of use, and those reasons gradually began piling one on top of the other so that I eventually found myself smothered under an irritating, itchy dogpile of "UGH" that I could not help but shimmy myself out from under.

I'll also preface all of the explain-y business by saying that I made this move on my own. (Thoughts and opinions are all my own, blah blah blah, see disclosure policy.) I did attend Novo Nordisk's "Future of Diabetes" summit thing in April, and they did talk about Tresiba a bit then. At the time, I had zero interest in MDI so I think I just sort of put the conversation in my back pocket like "oh, that's nice"... but I'm glad to have had that little bit of a reference point to inform my recent choice.

I imagine all of this ::gestures grandly:: brings up a few questions, probably.

Are you still wearing your CGM, or have all robot parts banished from the land?

I am definitely still wearing my Dexcom G5. I think the safety net my CGM data provides me is why I feel so comfortable going back to MDI for a while. 

So what happened? Did something break, or...

I think just got reeeeeeeal tired of... everything? about pumping. 

The tri-weekly cartridge and infusion site changes that always seemed to need to happen at the most inopportune times, which had me like



...the too-frequent-for-me infusion site malfunctions, all of that wasted insulin (seriously... how is it that I would draw up 300 units in the syringe, fill the reservoir with those 300 units, prime 22 units through the tubing to get all of the air bubbles out... but I'd then have barely more than 240 units to start with? That's shamefully wasteful, and was never a problem with my previous insulin pumps), all of those goddamn air bubbles, the way I'd always manage to have it uncomfortably stuck under me when trying to sleep, the need to always have it in my bra if no pockets were available, how expensive insulin pump therapy is...

Like, one annoying thing would happen, and I'd say "oh, fine, it's just this one thing and I can handle that", but then something else would happen, and I'd be all, "well, nothing is perfect, I just need to deal with this", and then more things, and "okay this is pretty irritating, but what other choice do I have", until one day it just sort of dawned on me that I do have another choice. I don't have to just live with this part of my life with diabetes; I could opt out of wearing a pancreas made of metal and science on my hip. I could say that this isn't good enough for me anymore. I could eliminate a lot of this headache, even if it opens the door for other ones. I could go off the grid, as it were. It felt... liberating.

This can be my tiny act of diabetes rebellion. (My pen needles are my liberty spikes?)

What are you using now?

Three things! A few people I know and trust have been using Novo Nordisk's Tresiba and really like it. I knew Lantus didn't work all that well for me back in the day, so truthfully I don't think I would have been so "jump in with both feet" about all this if I didn't have a better long-acting insulin option. 

Additionally, I noticed that our new insurance plan has Tresiba on their formulary list, so the cost is manageable for me.

So I guess you could say I was... (sing it with me now) Tresiba REEEAADAAAAY! (Don't worry, I'm cringing at myself too.)

Secondly, I switched from Humalog to Novolog. ("Novolog REEEADAAAAY!" doesn't have quite the same ring.) This was 100% because of the aforementioned insurance plan switch - I would have had to put up a fight to stay on Humalog. I had never tried Novolog, so I thought I'd give it a go and see if the fight was worth it. So far, hasn't hasn't caused any adverse effects. 



And third, I'm using an app to keep track of everything. Part of the appeal of an insulin pump originally was that it would do a lot of the logging for me, and also remember all of the math-y things specific to that time of day, which I'm bad at doing when left to my own devices of not wearing...devices. 

I know I know; I'm sorry. Still cringing at myself.

Enter, RapidCalc ::imagines singing angels and floods of sunlight:: which came as a recommendation from an insulin pen-using friend since I had never, until last week, heard of it before. It manages a lot of the paperwork that my insulin pump was responsible for:
  • Knows what my I:C ratios, correction factors, and target BGs are for different times of day,
  • Suggests a bolus after entering a BG and carb intake (can set different ratios for different times of day),
  • Keeps an exportable to .cvs history of BGs, basal delivery, and bolus calculations, so I can email it to a healthcare provider
  • Keeps track of IOB (insulin on board) based on the settings I dictate
It also has a lock screen push notification to remind me to take my basal insulin, which is gold. Full list of features here. Seriously, I am loving this app. It's easily the most expensive app I've ever purchased, but it has been money well spent.

How's it working out so far?

I took my first Tresiba dose last week, and so far... it's been working surprisingly well. I've always needed an amount of insulin overnight that can be best described as "a truckload", so I was worried about running higher on Tresiba while sleeping, but so far... not the case. 



(Ignore the first hour of the above graph... that was a me-forgetting-to-bolus-for-a-midnight-snack thing, not a long-acting insulin thing.) I am pleasantly surprised. Even my post-breakfast spikes have been pummeled into submission. Whaaaaa?

How long will this pump break last? 

I honestly have no idea. I just know that I'm really enjoying being untethered... at least until something better comes along.

9 comments:

  1. I recently made the switch to Toujeo and it's working way better for me than Lantus or Levemir ever did. I had to adjust my dose timing, though, since it was driving me low during the night when I took it at supper! I am super excited about this app recommendation, though. I've been trying a bunch and not entirely happy with any.

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  2. What is so sad (for an outsider like me) is that all this latest-greatest medicine/technology is heralded as innovation. May I tell you a brief story about my husband? Thirty years ago (he had been a T1 for about 30 years at the time), he—with the help of diabetic specialists at the University of Alabama (Birmingham)—was placed on a combination of Beef Ultralente and Pork Regular natural animal insulins. At 12 hour intervals, he would inject ~ 10 units of Beef Ultralente (acknowledged at the time as the gold-standard of basal insulins) to provide 24-36 hours of basal coverage. When he consumed a meal, he would calculate and inject an appropriate number of units of Pork Regular (bolus). He was untethered; home glucose monitors were just being introduced to the masses. Hypo events occurred rarely--perhaps once a month.

    With this regimen, he had the freedom to work/play when and how he wanted or needed to. When he ate, the Regular insulin provided bolus coverage. At the time, he could purchase both insulins over-the-counter, for less than $20/vial—no prescription required. His semi-annual visit to his doctor showed a1C’s that ranged from 5.9-6.4. Life was simple. All of this WAS available . . . and for market control and corporate profits these natural animal insulins were removed from the market. His view about diabetes in its present state is akin to slavery. C-U-R-E remains a four-letter word, not discussed in “polite” circles, and P-R-O-G-R-E-S-S is a very subjective matter.

    Melody

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    1. Melody, thank you for sharing this story. Your perspective is very interesting.

      I would emphasize that not everyone's physiology is the same. While one solution or treatment may work very well for one person, it may not be well suited for another. I am glad your husband has had such good success with what he's doing. Just as with scientific studies - the results from one cohort of study are not necessarily representative of the populations as a whole.

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  3. Good luck on the #PumpHiatus, Kim! I've been on one myself since May, and honestly at this point am questioning whether I'll actually go back to my pump... 100% not sure. But am happy with the Tresiba, NovoLog, Afrezza trio for the moment. (And seriously: I can't get the darn Tresiba READY tune out of my btrain...). Am glad we have options, if even for peace of mind. Hope it keeps going great for you! Thanks for sharing this.

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  4. Hi Kim, it's been a while. I think thenlast we talked was April of 2014.
    Yes, it's Diabetic Opinion on YouTube. Well I've been focused on other channels but the videos still live on.
    I fully understand the pump break. For me I dook a dexcom break instead. It wasn't load enough to wake me when I needed awakening from a low, and I hated having the pump and dexcom. But now I'm looking to get the G5 since it will work with my phone and watch.
    No more having the pump and another box in a pocket I guess. How has the G5 been working for you?

    NOTE: Well a few things I have learned over the years. For others reading this it may not be advisable depending on your situation to follow some of my lessons learned. This is what works for me, and may not work for you.

    So talking about the worse time for changing the infusion, yes it always seems to be a bad time when it want you to change. I've learned that novolog is good for 6 days once pulled from the vial. So I still change my infusion every three to four days (more like 3.5 days if I'm lazy) but for me 300 units will usually last 6 days so I don't change the insulin every three days. I know this is not recommended, but it's been working for two years now and I just don't push the insulin past 6 days if I have some left over. I know after 6 days novolog either looses it's kick or will become a little more potent depending on the environmental conditions it was kept in like hot summers. But for the most part I'm in doors, so this isn't an issue.

    As for the air, I've noticed in the last year it's got better. But I also started dating someone in the medical field last year and it turns out that the lurlock design will always find some air. I've also noticed despite the air getting into the lurelock it never seems to find its way into the infusion tube. The first time I realized this was in the ER hooked up to a IV and I questioned the air in the connector to the line. No one, not even the surgeon was concerned about this.
    I know when I first did those videos I was new and maybe a little over cautious, not so much these days. It's just the nature of the beast as long as you get the majority of the air from the connector when first priming and out of the tube before hooking back up. But then three days later that bubble is back and it's not from the cartridge, it's from the lurelock connector.
    As I mentioned it never finds its way into the line, so no more worrying for me once I realized this.

    I wanted to mention the 22 units primed from 300 units and the pump showing 240. I have found this is because it's using a sensor to measure the density of the bag inside the cartridge. It's never 100% at first. I was also concerned about this until I noted the time and date when I filled it, then noted the time and date of the next change. I went and added up all the logs for bolus and included my hourly rate as well. At the end it said I had 10 units left and I found the ending number to be much more accurate then the beginning numbers.
    But what mattered was that the total insulin I used over these days was only abut 2% to 4% off. The numbers were almost perfect considering the FDA still allows a 10% error margin with the glucose meters. I'd say the pump was counting good for a sensor that is literally not touching the cartridge bag.

    Well anyway, I'm sure a day will come when I also take a break. I wa almost forced to when I lost my health care. The old needle and vial is always going to be the cheaperst option and I still may have to do this in a few months but not by choice. I hope this happens in the summer for swimming and outdoor stuff. I know lantus was part of my problem and the pump with novolog only improved my numbers dramatically. But as you mentioned other options are now available to try.

    Well let me know how the G5 is working for you, I hope I can get approvals before the end of the year. I guess I'll find out soon.
    Enjoy your pump break,
    Scott

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  5. I wish you good fortune. but, well I still love my pump and woudl never dream of giving it up. I am glad we all have options.

    This item has been referred to the TUDiabetes Blog page for the week of December 12, 2016.

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  6. https://likesugarsweet.wordpress.com/

    If you have time, check my blog. I just started writing and I am trying to connect with people with Type 1 diabetes all over the world :)

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  7. Hi Kim,
    Just found your blog, and I enjoyed reading your post. My son and husband are both T1D, who both decided to go off their pumps. My husband first, and then my son, because both of their A1Cs kept going up, from pump errors, and honestly they are both really happy with their decisions, and also don't plan on going back. Thank you also for the link to the diabetes app, I've been looking for one for my son to use. Good luck to you on your pump hiatus! =)

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