It’s been a little over 2 weeks on the cortisol pump. It is most definitely an improvement over oral steroids, but wow, I have so much to learn!
My delivery rates still need adjustments, especially at night. So far my sleep quality hasn’t improved much, but I’m confident I’ll crack this code soon! 😀 What I get out of the pump is entirely dependent on how well I can manage the delivery rates and choose a well performing site to place my inset. Picking the right site for an inset can be tricky. I try to choose place that wont be bumped or pulled out, but it also must be a spot with plenty of fat and absorbs the medication well. This means it can’t be near the belly button, any old sites, or scar tissue. Because of surgical scars, I’m somewhat limited on site options.
I’ve been making plenty of mistakes 😉 I had my first bad site as a result of a newbie error. I inserted the cannula without removing the protective cover, and didn’t even realize it. Surprisingly, this site worked for nearly 24 hours, not very well, but it did okay before failing completely.
Site changes are not the most pleasant thing, even when you’re feeling good. When you’re crashing they’re near impossible. I was fighting to keep my eyes open, and struggling to remember what I needed to do to change the inset. This taught me to keep everything I need for a site change in a bag all together.
I also learned that cartridge changes that are not done at the same time as a site change will waste 10 units of SoluCortef to prime the tubing if I don’t use new tubing. Lesson learned! Save the extra tubing from site changes and use fresh tubing for each cartidge change.
Another lesson I learned for cartidge changes is to mix the SoluCortef first, before starting the cartridge loading process. This should have been obvious 😉 . Once I start this process, the pump will stop all deliveries, so I am without medicine until the process is complete. Normally this can be done easily without an issue, but sometimes I do get interrupted, and ideally I want my time without any delivery to be as limited as possible. So now I mix the meds and have everything ready before I start.
When managed correctly, the pump allows me to do more than I could when I was on oral steroids. I still have bad days, usually they are a result of me being too ambitious and over exerting myself. Little things that used to be a big challenge for me are getting easier. Another huge plus, is that I dont feel like a walking pharmacy when I leave the house. Before, I would have to prep and pack all of my doses of pills in order to go anywhere. I still have a dose of back up oral steroids and a site change kit in my bag, but now I can just grab and go, as opposed to all that preperation. I also love not having to take doses in public anymore. It doesn’t seem like a big deal, but its’s a little thing makes you feel less abnormal.
I’ve already noticed some encouraging improvements in the 2 weeks I’ve been pumping. There is lot to learn, but I do love a challenge. I only hope this progress continues!
Thanks for accompanying me on this journey friends!