Just got home from getting the PICC installed and my first infusion.
Getting it put in was pretty much what I expected based off of other people's stories and what I had read. That didn't make me any less nervous about the entire idea of this entire process. The nurse there, to her credit, did her best to try to calm my worst fears....didn't help much, but she tried.
My arm hurt(s) quite a bit after the fact though. She commented several times on how tough my skin and vessels were, not sure if that's part of it, but even after taking 800mg of ibuprofen I'm still feeling it (that did take the worst of the pain off though).
The infusion and teaching process was kind of what I expected after reading about that as well (found a great little guide online from a family that had to deal with one for their daughter who had cancer). Of course, they go over all the possible side effects and issues, and by the time you leave, your fairly convinced you're about to die.
They have me on cefepime, which supposedly does remarkably well against the enterobacter bacteria, so fits with the research I've done as well (for some reason reading scientific articles about these things I find helpful - plus it helps me know what questions to ask).
So now on to the saga of every 8 hours, for 30-40 minutes, I have to hook myself up to this little ball of antibiotics and "infuse." Mostly, this sucks. This means I do not get a full night's sleep for the next 6 weeks, no matter what. That alone probably means no real working out since I'm going to be trying for naps as best as I can, or having to wake myself up after being asleep for an hour. It means carrying drugs and cleaning supplies with me to work every single day, and then dealing with at least one infusion during my work day.
So there are 126 opportunities for me to screw something up. I go in weekly for dressing changes/check ups, and med pick ups. The bags full of supplies that you get is ridiculous....literally a medium size garbage bag worth. For one week. F.M.L.
Supposedly you can do things while infusing, moving around and such won't bother anything, but you still have this tube and little balloon thing you're toting around...ugh.
Emotionally I'm kind of a disaster. Between the fears of something going wrong, or having a bad side effect, or another infection, or the infection we're trying to treat causing even more problems (let's face it, at this point possible amputation isn't off the table yet as a viable option if this goes south); plus the inconvenience of dealing with these drugs; plus trying to live my life around yet another problem; and finally just the time involved. I'm so beat down emotionally I don't even know how to react anymore. Tears, or sheer morbid indifference seem to be the extremes I'm settling in. Now we'll add a lack of sleep to the mix - fuck, I don't want to be around me.
Which leads to the final issue of the simple fact that I'm pulling away from people. I'm not capable of giving a flying fuck about how good things are for them or how "bad" their problems are - unless their problems are truly bad (like, way worse than mine) in which case I'm that much more sympathetic.
All said and done, I get the impression this is exactly what I was expecting - a royal PITA that has the capability to make your life a living nightmare - more so than it already is. And it hurts more than they say - the numbing helped but it did NOT take care of all of the pain, and my arm fucking hurts right now.
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