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Showing posts from December, 2009

2009 in a nutshell.

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It might be a hefty nutshell though.

Anyways. 2009 has definitely been different. I've certainly had good points which I won't be forgetting - I started college, learnt a hell of a lot of awesome photography stuff, made friends that have literally changed my life, had no major LF drops (yay!) laughed till I've cried countless times, got a job, went to London... I could actually go on, but if I did the list would never end.

We've lost too many people this year, that's for sure. That's the only bad thing about this year - it's the first time I've really lost a friend with CF. That's the downside of being on the CF boards, but it's just something you have to deal with, as without the boards, you would never have known those people in the first place. And when those people did die, it made me take a double take over a few things, and hold on a hell of a lot tighter to what I've got.

Swimming failed this year. I swear I've barely gone at all,…

[Good!] Port update

So....

My port works fine, which I found out when I went to the hospital on Monday (again with the wakings at stupid o'clock). It still kind of hurts, which is annoying, but the important thing is that it works as I've got IVs in a few weeks in Jan, and a broken port would sort of affect those plans.

I swear I was pretty freaked out all weekend cause had no idea what it was, whether it was the port or just me being my weird self (or possibly caused by yet another injury), and I was pretty scared that it was this port packing up for good. I mean, I've already had two other ports so needing a 4th one already would have pissed me off a bit. I was freaked that if this port buggered up, I'd have to go through the whole thing that happened last time I had a port op - having crap sats for days afterwards and spending more time than I bargained for jacked up on oxygen. It was definitely my most difficult recovery that I remember, although as that was almost 2 years ago, anythin…

Port-y buisness.

What the hell is with my port? It's been a few days now, annoying pain right where my port is, sometimes really sharp it-makes-you-tell-the-first-random-person-you-see sort of pain, and it goes up to my neck where the tube goes. The pain goes away and then comes back, which is always annoying, as it randomly gets you. Like now. Only it's taken a new turn and now my shoulder feels all achey and tired. Plus, I swear the port itself has moved. You can feel the tube from the port half loop round and go up towards my neck, and I fricking swear its moved to the left a bit. It's hard to describe. But fuck, seriously? I've no idea what's happened and I won't find out till I go to the hospital on Monday. I did want to go on Saturday but my Mum phoned up and the consultant was actually on the ward at that point. He said just wait till Monday and come into clinic.

I bet they're fucking getting tired of me having impromptu clinic appts, and if the nurses weren't inc…

P.S. It's snowing.

So... my arm still wrecks from the swine flu jab. Not as much as it did, but I'm sure bumping into stuff with that arm probably doesn't help. You cannot add me to a flu jab and expect to come away from that completely injury free. I've got the joy of another hospital appt in early Jan, where they'll be taking several pints of blood (b/c draining a CFer of half their blood sounds like a perfect idea...) b/c I have to get my annual bloods taken to check all those fun levels. I'm quite curious to know what my RAST and IgE levels are, even if I barely understand them, b/c last time I had them taken, they were high. Actually, 'high' sounds like an understatement. Apparently they had rocketed to ridiculous heights. My IgE levels were over 2000, and apparently an ok level is under 500, or something. My RAST levels were around 70, which is also apparently pretty high.
But then again, this was a few months ago, so I want completely different results (of the better k…

Keep on keeping on.

On Sunday, pleurisy strike 2 [it seems to have moved from my right side to my left] got more painful than it had been over the past few days. I was quite freaked - my sats were 87, my HR was high and I was breathing pretty weird. Mainly b/c the shallower the breath, the less painful it was. The thing is though, that's not a scratch on how painful it can get. I mean, hell, when my Mum took me to hospital with it in April, I needed a wheelchair to get up to the ward, and all of those oh-so-fun trips down to x-ray/ultrasound. And I never need a wheelchair. So I think that says something.

I was fine on Monday morning but by the afternoon it started to hurt again, probably a mixture of being outside and those lovely coughing fits. But I ended up leaving work early b/c of it. My Mum phoned the dr and he said to bring me in as early as possible to clinic the next day. Which meant I was woken up at the ungodly hour of 7am. I think we should be able to follow a rule - if the moon is still v…

Dazed and confused.

Um, wow. My lung function has FINALLY started to behave! It's crawled back from low 60's to 70%, and I'm sooooo happy about this - there was part of me that was terrified I'd dropped even lower b/c of the cold I had and the fact that the IVs I recently finished did jack all. But it increased, and it's the highest its been since May this year. Which is around the start of the whole pleurisy thing (I swear I'll stop mentioning the damn thing eventually!) but realistically, my LF has been dropping all year, so to get a proper increase is what I've been trying to do for a while now.

But... I had to work this percentage out by looking at my old lung functions. But this works, in theory, b/c its based on your height and age, and I'm only looking at recent results. Anyway, I had to do it this way b/c trying to work it out via an online thing fucks everything up - none of my results from the past matched up with the results on the online thing, so I'm guessi…

Hardcore...

I'm not complaining here, but a lot of the teens on the UK CF forum talk about either getting sedation or gas and air for blood takes or getting a line/venflon put in.

Yeah, really hardcore guys.

I'm sorry, but no. You're gonna be doing this your whole life, you might as well get used to it. And if you need to be knocked out every time you need a line to get IVs, well that's just going to make matters worse. When I was a kid they'd use the emla cream if I was getting a line or bloods, and that's it. And this is stuff starting from about age 6. And I'm talking about teens who need gas and air for a needle stuck in their hand.

Yeah, ok, so maybe it might make it a tad less traumatic for them, but if the older CFers could do it when they were younger, you shouldn't have to sugar coat it for the younger ones. But gas and air? I can't seem to get over that. I do once remember being in hospital when I was 11, and I was on the ward, actually on the ward b/c t…