Basically, the IVs of which I'd tried hard to persuade the dr that I needed a change of, didn't do the trick. When I started them, we kept one of my usual, colistin, and changed ceftaz, which I'd been using almost constantly for every dose of IVs, for 15 years, and switched it with Tazcocin. Now, I was kind of hoping this would kick my lungs into shape. Especially as it'd been a mere 3 weeks since my previous IVs and it was really starting to take the piss (insert ironic ceftaz piss related joke here). But with how quickly the cold I caught had wrecked havoc, I genuinely couldn't have even waited till my next clinic appointment. So IVs were started and I waited for the IV goodness to hit.
And instead of feeling better, I felt worse. pleurisy came back with a vengeance on some days, the hemos decided to join the party, and the exhaustion was starting to make me look like I'd taken up boxing (p.s. hammer to the face related injury from the other day had no play in these attractive dark circles under my eyes) So a week into this, and yes, all this started AFTER I started IVs, I decided that I wasn't putting up with this for a further week if I was going to continue to feel shite and not improve. I mean, 2 days after starting IVs, usually I can tell a noted difference. Mostly cos the crap in my chest can't wait to clear itself and I shift a serious amount. This time it was different. Horrible chest, horrible chest contents, a death rattle that would stay all day and give me a break for a mere 5 minutes after physio or hypertonic saline nebs, before starting up again. So I had my sister call the chest clinic. First mention of hemos and their ears perked up. Admission was mentioned, and I was told to come into clinic at 2ish to speak to the consultant. Even though he was quite busy running the chest clinic, the chest ward, and HDU. The outcome of this, was that they wanted to admit me straight away. The ward was full, so they had to send home one of the regulars that are always in and refuse to do home IVs, or generally, look after themselves. The doctor genuinely said that there are a few patients who 'treat the hospital like a hotel', and the girl who was sent home so I could have a bed, has basically been in pretty much every time I have too. Which isn't often, but its often enough. I don't understand why some people refuse to look after themselves. And obviously its hard for the drs to see what they're really like at home, so they can say they take everything, do all nebs/physio etc, when in fact they're not, and they've already got their bags packed basically to re-admit themselves. I know some people have no choice but to do IVs in hospital, which is fair enough, but some people just don't even try. Obviously the idea of spending so long in hospital, willingly, is mad to me, as I hate admissions from all aspects, and then some. But still..
Anyway, I digress. So, I did get a bed on Thurs, but the plan of action didn't exactly involve much. They gave me a steroid increase to 30mg whilst I was in, and made me finish the rest of the 2nd week on the same IVs. It didn't do much, but by the end of the 2nd week, my chest was a tad clearer and the hemos had stopped, but I wasn't 100%, so they put me back on old faithful, ceftaz and colo, for another week (and a half if we're being picky). So the drugs were changed half way through my week long stay, and I was able to go home on Thursday (after about 3 different doctors asking whether I preferred Thurs or Friday, I couldn't have chosen quicker to be honest. I had the pharmacy and a couple of nurses double checking the IVs to be delivered on Thurs afternoon at home, so I could finish the course. I thought it would only be a few days worth as three weeks would mean I finish either today or tomorrow, but I actually finish on Thurs coming, judging on the amounts of intermates in the fridge.
You'd think home IVs would make things so much simpler... and it usually does. However, the pharmacy managed to forget to give me one of the drugs, and delivered 14 (7 days worth) of ceftaz in intermates (when I usually have syringes, cos no one thought to check that part with me. TA!!) I got absolutely no colomycin at all, and both the delivery men and the hospital didn't have a clue what had happened. Lucky that it was colo, and that its simple to mix up, as I have plenty of vials from nebs, I know the dosage I need, and you only need to add saline to mix it. If it had been the other drug, we were probably looking at me going back into hospital until I could have some delivered (especially as deliveries are arses over Fridays/weekends). Basically I have to suck it up and mix my colo IV twice a day until Thursday evening which is my last dose. Not the worst thing to happen when some people have to mix up every drug, every time, but still, annoying to have the mess happen in the first place.
I'm just glad I was able to finish these at home, cos I don't personally notice a difference between home and hospital, other than the fact that I hate waiting on someone to bring me my IVs etc. I even had the joy of having to get someone to replace my port needle on the Tuesday. Our hospital says it should be replaced after 2 weeks, so I went down to clinic via insane wheelchair driving porter to get it changed. The nurse who did it said she was learning, and I'm fairly sure I was her first or one of her first attempts. She did well, despite poking me too hard on the edge where the tube connects whilst trying to get into the right position, but accessed it fine and it flushed fine too, even though she pushed it sooooo slowly, probably just out of nervousness. When I got back to the ward I noticed it felt weird, like it was sitting at an angle and I seemed to pull the skin around it when I moved my arm (or yawned...) I ignored it, but must have caught it at some point, as when it came to do my evening IVs, nothing would budge, and luckily my nurse for the night knew how to access ports, so 10 minutes later I already had a new one plonked in much more nicely.
But yes, it's nice being home and not worrying that you're a burden. It's nice to be able to see my parents whenever they're around, rather than just for the short while they visited (basically every day, sometimes with my sisters too) and it's nice to have been able to spend a couple of full days and entire weekend with my boyfriend rather than worrying about him driving home through newcastle at 1 in the morning. The handy thing about our unit is that as it's sort of separate from the rest of the ward, we don't strictly have visiting times. Which meant there were a few late night visits and trips to the hospital costa, and those are the things that keep you going just that little bit more. And obviously I've got massive love for gem, stiv and my old friend steph who all texted me loads and kept me company basically whilst I was in and they're a fair distance away so couldn't visit.
And as always, the photo spam.
Being highly mature at clinic a couple of weeks ago
My room on the unit. No fridges anymore cos of infection control, but we do have ensuites (to the left of where I was standing) and flatscreens with freeview, so there are worse situations to be in. The sweltering heat wasn't helped by the minimal opening windows though, and we're not allowed fans "in case they blow up." Cos that's normal.
Not the worst hospital food! apart from the tomato soup, vom. Our CF menus even come with nice trays :D
We have a sign :D
What I do when I'm bored, whilst either entertaining or pissing off the rest of the ward with my itunes blasting
My favourite tray :D it's so me, I was seriously tempted to nick it if they wouldn't question it's disappearance
Bored, can't sleep, so it's instagram selfie time, clearly.