First of all: YAAY for me! I'm finally all caught up on my work for this paralegal program! I mean, that's cool and all in and of itself, but that also means that I get to ease back to the pace everyone else has been clipping along at for the last little while; it'll still be a good bit of work, but I'm starting to feel like I can spend non-treatment, non-cleaning, non-errand time on things other than schoolwork without feeling guilty. Things like cooking, and painting - and blogging. :o) So hoorah!
Now that we've got that established...I've still got this stupid PICC line. It's a stupid PICC line, as opposed to a regular PICC line, because it won't give a blood return, so as far as I'm concerned, it's lost at least half of its utility. I'm also not even using it! I finished my extra week of Cefepime/Cipro combo last Friday, and had actually gotten worse, not better, as the week progressed, then really took a wheezy, pluggy, hemo-heaving turn over the weekend. I already had an ENT appointment Wednesday, so my CF doc was precious enough to see me then (rather than having to stay over to be seen on Thursday, aka CF day).
We decided to keep the PICC placed, but start a round of oral Predisone, as the plug-fest generally is a pretty flagrant ABPA flag for me, then give it a week and see where things stand. If I'm feeling much better, then great, I just stay on the Prednisone for another month or two (as well as megace, I might add) and continue to live as a hungry, hungry (angry-moody) hippo. If not - and here's where the PICC comes back into play - I'll start another round of IVs, just with a different cocktail (Tobramycin and Meropenem, in case you're curious).
My nerdy and undying devotion to the scientific method appreciates this plan as it lends itself more readily to the isolation of the independent variable causing all of this crazy, feeling-worse-after-IV's nonsense. The recent creep of summer heat, the sub-par state of my skin and hair, and my summer-induced urge to wear flouncy cute things combine to make me wish I was just doing it all at once, so I could get that much better that faster and get back to not being hot all the time and deep conditioning my hair and wearing maxi-dresses (respectively). The deal I've made with myself is that either way, I'll be fine as long as I'm back to normal by my birthday (June 28th - woop woop!). Not that I really have an alternative plan of what I'll do to be "not fine" if I'm not PICC free, but whatever.
Oh. And I'm finally going to put on my big girl panties and call Monday to make an appointment with the neurosurgeon. Figure I should go ahead and get this all figured out and taken care of before I start any kind of big girl job, or heaven forbid spend 100grand on law school only to be reduced to "See Spot Run." I'll definitely be pinning another badge on my badass sash once this is all over with though. (Speaking of badges and sashes, has anyone else seen "UP" yet?)
Well folks, I just got back from dinner, yet I am compelled to eat again. I'm going to go make some white chocolate pretzels and/or pineapple casserole. and/or Cupcakes. We'll see.
Have I mentioned I'm on Predisone and Megace?
Have they tried to put that "ultimate blood thinner" in your line? My PICC had problems last hospital stay and they had to put that in my line a couple of times and let in do it's magic. Sorry I don't actually have the name for you. It's a super unclot medicine.
ReplyDeleteRonnie
I'm on pred too, and honestly, the increase in my appetite is so bizarre compared to what it was just a few weeks ago. Just after finishing one meal, and I'm not even full, and end up eating half the kitchen trying to fill up that bottomless pit that is now my stomach.
ReplyDeleteBright side, we're probably both really pleasing our dietitans! Xx
Ronnie - they haven't, but I'd definitely be interested for them to give it a shot, especially if I end up going back on IV's. I've never had one not give a blood return but still be functional otherwise (I've just had them infiltrate or just stop working altogether). Thanks for the tip!
ReplyDeleteMegan - It really is just a strange sensation; I know what you mean! I will be physically stuffed feeling, but still be craving more food to the point where I have to make myself back off so I don't end up sick. I'm with you though - I'm actually really hoping it'll kick the ABPA in the butt AND give me a good booty boost at the same time! So excited about London for you, btw!