Ok, so good news... Hopefully these IVs will actually just be for my usual 2 weeks rather than the 3 weeks, b/c at clinic I gained weight (as usual. Not as in put on a whole tonne, but gained a respectable amount, which I'm getting good at these days) and my PFTs are stable. I'm slightly worried that these 'stable' PFTs are staying in the mid-60's when I've had them in the 70's and 80's in the past year.
Hmm. But I'm still hell bent on improving them. My physio suggested I start swimming, which I'm going to. Unfortunately I have the craving to go swimming now, and with a port needle in, that's sort of out of the question. But the second I get it out, I'll hop on the bus and make a (probably knackering) walk to the pools. She suggested it as swimming is 'brilliant' for your lungs, and I admittedly haven't been in a while. I used to swim every Friday night, and now it's more or less just swimming in the pool when we go on holiday. But at least when I do get my port needle out and I do get my arse back to swimming, I won't be thrashing about like a new born seal, and I'll be making lengths in a kick ass way like I used to.
Even after I slipped on the edge of the pool and ended up with a scar on my chin. (And I still don't know what the hell happened that night to be honest).
Oh, I've just found out I can get free swimming at the local pool until I'm 19. Score.
I escaped work unscathed on Friday, and fell over at college on Saturday. I was picking up my pen that had escaped across the floor, twisted round and landed on my arse. Ow! Luckily there's no major injuries this week. I did fall up the stairs a few times whilst waiting for the side effects from colistin to wear off, but to be honest, its no more than on a usual day. These side effects seem to only be on the second day of starting my IVs, each time I've had colistin, which causes the oh-so-fun drunk walking. But the good thing is, these side effects are getting less and less with each time I have that antibiotic. Which is great b/c I get to reap the benefits of Colistin without feeling like crap anymore. Walking into things and having the slightest headache, I can deal with, especially as it goes away the next day. Having those side effects in three-fold on the first time I ever had IV colistin, not fun. But I still felt ridiculously better afterwards.
I wish I could say I've done something exciting, but I really haven't. I suppose the highlight was college, as I love it. Coming in a close second was getting the IVs. Which seems kinda sad, but I have no life. Haha. I like seeing the nurses and I quite enjoy the IV pole skating whilst waiting for my hours worth of IVs to go through, as I always get the first dose started at clinic, and it's always in the IV gravity bag things. Luckily at home its one syringe and one intimate thing.
For the Heparin flush, my hospital generally uses the brand that comes in a purple box which has an image of a hand with a canula in it. I've forgotten what the proper brand name for that stuff is, and we don't have any lying about in the house, as I can't use that stuff (I'm getting to it... hold your horses.) Anyhoo. As I said, I can't use this stuff as it causes the tinnitus in my ears to go really really loud, and I get a headache from it. Eventually, the hospital decided to change the brand just for me (as in, they go to more trouble when ordering my IVs and such to make sure I get the right brand of heparin, rather than just getting the usual generic stuff they give to everyone else) and now I use a brand called Canusal. This stuff does the same job (it prevents clots in a line or port) but without wicked headaches or louder ringing in my ears.
I'd put links to show what the brand/box of the different heparins look like, only google is tres unco-operative and doesn't actually have an image of either box.
Funnily enough, the company which sends me my IVs sent me the 'wrong' brand of heparin (I've no idea how they managed to cock that up considering its stressed on the order form which the nurse sends out) but it didn't matter much - we've always got extra stock piled from my last IVs that there's enough should there ever be a heparin emergency. Anyhow, so there was more than enough to last for a couple of days, before the delivery people sent round more canusal and picked up the other stuff.
I consider that quite funny, but then again, I'm weird like that sometimes.
Right, I'm off *waves spatula*
... yeah, a little inside joke for those UK CF forum peoples. I love them like that :)
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