Lovebuch family happenings

Home! I got out on Tuesday. Getting around pretty well. Had an SCCA appt the day after I got home to get a dressing change on the PICC line. Sounds simple enough right? Not anymore. The blinatuzomab line needs to run continuously and it also has extension cables so I can access it myself to change out the bag.  Changing the dressing with the blin running wasn’t the issue, it was what to do with the extension cables, which get changed out with the dressing change typically. I had had the teaching on the day before, but I don’t know, I blame it on the fever, I kept drawing a blank on what to do with the extension cable once I was in the chair getting the line changed. The nurse was trying to figure out what to do too, and we both sat there and brainstormed.  It’s a bit complicated to explain without a drawing, but basically we were wondering how to prime the new extender line after the blin bag has been started. After some back-and-forth, we ended up waiting on doing anything with the e

Still in here.  Been having a bit of a rough time. Many episodes of Grade 1 CRS (cytokine release syndrome) with fevers almost nightly and sometimes during the day. Some of the early days, I slept so poorly because of the fevers and the dexamethasone, I couldn’t do much but lay in the bed and try to get some sleep the next day. My liver inflamed at 48 hours and that meant stopping the drug over night until things improved. They did, but according to protocol, a greater-than-4-hour-stop requires another steroid assisted start.  So another 20 mg dex and we continued forward. I transitioned to the higher dose of Blina on time, but almost instantly had more high fevers. At this point I was still hopeful that the fevers would leave and I would get out on the 3rd. That turned to 4th, and then the 5th. Then I accepted my fate and knew it was gonna be more like the 8th or 9th. The silver lining is the CRS reaction is the body’s response to killing leukemia cells. So it’s proof that something