Monday, 28 December 2009

2009 in a nutshell.

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, although I blamed things like the -20*C weather or having a cold. Good excuses in my book, but I kinda just want to avoid things like what happened the last time I went there - someone standing outside the cubicle I was in, having one of those loooooooooovely coughing fits (and I didn't hear her talking at all given I didn't have my HAs in) so god knows how long she was standing there asking what was up. I eventually saw her feet, opened the door and she was pretty much like 'You're coughing a lot you know.' I just wanted to say one thing to her, and if I had the energy to, I would have said it.
I'm guessing you already have a hint to what I wanted to say to her. Something along the lines of 'Piss off!!!!!!!!!!' would have gone down nicely. I'm still at a loss to why people like pointing it out. 'Yeah I know I sound bad, but now you've pointed it out, I'm even more aware of how crappy I sound. So thanks for that.' I might actually go as far as wearing a sign that says 'I know I'm coughing. If you're gonna point it out, kindly fuck off.'

Attitude is clearly getting a win here.

Short of getting nostalgic on everything that has happened this year, I've got nothing else to write. If the good times of 2009 are any indication, 2010 is going to be so much better.

At least 2009 goes out with a bang. Jessica Wales, who has been waiting 4 years for her double lung transplant finally got her call last night. With 9 false alarms, and the 10th one being the charm, everyone is incredibly happy for Jess getting her call in time - she's been on a very bumpy road these past few weeks/months, so getting her call now is clearly the best belated Christmas present and start to 2010 anyone could have.

Now... all we have to do is get all those other lovely people their calls. One of those people include the amazing Rachael Wakefield. Rachy has done brilliantly getting SO many people signed up on the organ donor register. But we'll always need more people. So if you're not signed up, make it your New Years resolution.

You could save someone's life. Hell, you could save up to seven people. Now that's finding the silver lining in something as terrible and scary as dying.

So why not?

Wednesday, 23 December 2009

[Good!] Port update


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, anything could go different next time.

Plus, there's basically zero chance of me letting them do a port under local. I'm such a wuss it's unbelievable. If anyone ever tries to give me an op of any kind under local, I'd be such a difficult patient they'd be begging someone to knock me out.

Trust me on that.

At least I can stop freaking out about it, and another port op is not something I have to think about right now. I got 5 years out of my old port, so I'd be pretty damn pleased if I got more out of this one.

That's it I guess! Hope everyone has a wonderful Christmas! (If anyone needs me, I'll be surrounded in the calorific goodness known as most xmas food. So, try not to need me.)

Sunday, 20 December 2009

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 incredibly nice, I'd hate going there.

It could be anything really. Maybe just the cold, maybe it's just being strange, or maybe its in major need of a flush to stop any clots that are plotting away. By the by, I had it flushed already this month, so it's not like I could have prevented this happening. What I really think might have caused this whole fuck up is b/c it's right next to my right shoulder. And as I'm right handed I usually automatically use my right hand to pick something up. And I'm stupid b/c a few times I've over stretched my shoulder to the point of going 'Argh, that hurt'.

Aaaaaaaaaaaaaanyway. Besides obsessing over my port like an insane person, not much has happened. The forum has been bombarded with some crude talking prick who basically really needs to learn the words 'That's too much information'. When people told him to at least clean up what he spoke about, he got pissy. Jenni and me decided a new spatula thread was in order to lighten the mood, and he got pissy at that too.

Dude, it's called a chill pill.

Basically, he got annoyed we were talking about utter rubbish (ahem, spatulas) just for a laugh. And actually said something along the lines of how he didn't want us to talk about stupid things like that on his forum. Oh yes, 'his forum'. B/c apparently it's his (It fucking isn't mate) and whilst he is allowed to talk utter bollocks, we aren't. So I've just decided to ignore every other thing he says. He insults people and finds it hilarious, and everyone else knows he's just being an immature 2 year old (With poorer spelling skills but a slightly wider vocabulary than you'd rather a 2 year old would have).

But on the other hand, it's provided plenty of entertainment for those boring days where you're stuck in the house b/c the only way to go outside and stay even slightly warm, is to resemble an Eskimo.

Oohh, I've added a link to my Flickr page on the sidebar ('Photos I've taken'), so if you ever get bored enough, you can go be all nosey at the pics I've taken. There's plenty of wintery ones in there (which in the process of taking, I practically froze, but I think they turned out ok).

Thursday, 17 December 2009

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 kind, not the crappy kind, please). Y'know, if they ever tell me the results. If they don't I'll just have to steal my hospital folder. A task I've been working on for quite a while now.

At the moment my port is being a bit... odd. It feels like there's a sharp pain going through it. It goes away and comes back, and it's definitely there when I cough. It's odd and kinda verging on painful. My neck is uncomfortable too - where the tube for the port is. My mum actually said she'd take me to hospital if it gets worse, but I don't see what they could do about it. Part of me is worrying that it's my port trying to give up the ghost there and then, but it's not even 2 years old. (I'm not saying new ports can't kick it though. My first one lasted mere months before needing to be replaced). Obviously I worry like hell thinking that I'll need a new port - my last port op went ok, it was the recovery that was a bitch.

Not only that, but I find lines in my arm/wrist/hand sting like a mo-fo, which is also why ports are pretty much a god send. Oh well. I'll find out in Jan if my ports still clinging on or not (And it better fucking be, or I'll be having words).

Friday, 11 December 2009

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 visible when you wake up, you're allowed to sleep in. On the way to Newcastle the sun came up. That's how freaking early it was. All that happened to hospital was the basic tests (I lost weight dammit) and then seeing the dr who ordered me an Xray. After the Xray (Where both me and my Dad realised that we should turn off our mobiles b/c the Xray dept. is probably the last place you want your mobile phone on) we went back to clinic where my dr said there was nothing different on this Xray compared to my last one. Um, I was ill when I had the last Xray.


The weirdest thing about the impromptu clinic appt was my LF results. I was expecting the same numbers, if not lower, b/c I felt like hell. When the technician showed me the numbers I was pretty damn shocked. My dr did the clever turning the Litres into a percentage, and there was an 8% increase. In 6 days. And 8% is a fucking massive jump for less than a week. I don't even know what caused it. Cipro? One thing about my LF increase is that I feel guilty. I mean, on top of those pretty elated and greatful feelings that my lungs are finally being kicked into shape. When there's people with lower LF, or their LF is dropping, I feel bad that I'm doing better. I just keep hoping that everyone who isn't doing as well is just going through a blip and they'll get back to normal soon. With all the confusion, I said to my Dr: 'I feel like hell but my LF has just increased loads. I'm weird'. He said 'Yes you are.' Lovely.

Soooo I went home and then had to go get my arm assaulted by the swine flu jab. The nurse I saw was a tad annoying. She repeated the 'are you allergic to eggs' line about 3 times. When she was satisfied with my 'No' and going through my medical info on the computer, to be sure (I love it when they do that, they always look so shocked b/c I'm on so many meds), she stabbed my arm without warning. Now the being stabbed in the arm part doesn't bother me - I've had enough flu jabs (and not to mention use of my port) to not be bothered about it, but its the stuff inside the jab that hurts like a mo-fo. OW! I mean, holy christ on a cracker that fucking hurt! And then 5 seconds later I could feel my wrist stinging in the same way. And now I have a lovely red mark, there's a bump on my arm and in the place where the jab went, its all warm, like when you get a temperature. I have the fun of looking forward to that again in 3 weeks - the nurse said, alright, wrote on a note (I couldn't understand a damn word she said. It's like I'm surrounded by mumbling idiots) that I need the jab again in 3 weeks, b/c of the amount of meds that I take, it's possible the jab didn't work the first time round. So 30th dec is 'lets stab Megan's arm again' day, and that should be fun for New years(!)

On the bright side, at least I won't get swine flu. But potential drunken antics on New years suggests my arm won't forgive me in a hurry.

Saturday, 5 December 2009

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 guessing that maybe its based on the LF of a healthy person (or so according to my Mum) so it probably won't give me the same results that my Dr gives me.

And if he was giving me wrong results, that's beyond messed up. So I'm sticking with saying I have 70% rather than the lower number that the online calculator tried to depress me with.

Whatever the number, it increased nonetheless. And I'm thoroughly convinced that it was down to swimming, and obviously laughing. A LOT. Maybe no one else believes that laughing so much you actually fall over can increase your lung function, but I do. I'm glad that I finally got some good news for this year, even if it's almost over - I'll obviously not forget the bad things, and especially not the people we've lost, and I can take the lessons I've learnt to make 2010 be nothing short of awesome.

I also got other good news - I got information about an interview for my college course. I didn't even get that far last year, so I'm really hoping the course I'm on (and have almost finished) will get me onto the commercial photographic practice course I originally wanted to do. I haven't gotten a secure date for the interview, but the email came before UCAS told me whether I've been accepted. I think, when you get an interview to determine whether you'll get on the course, its called a conditional offer. I'm probably wrong though.

The email said I need to show my work from the last two years or so, which means if I decide to make a portfolio of my work, printed out, that's a hell of a lot of printing. I've also got the work I've done for this course, and someone suggested taking in one of my art books b/c they wanted to see work such as sketches too, which that book is full of. Actually I have 6 art books full of that stuff (two years of 6th form art) but I don't want to drag them all in. For starters, they weigh a lot when you carry them together, or so I learnt when I left school carrying 3 in one go. And secondly, the tutor who'd interview me would probably hate me for that. So one portfolio, one art book from 6th form and one college course art book should be ok.

Oh, when I went to the hospital for my appt on Wednesday, I didn't see my usual Dr. I saw a younger Dr who works with my usual Dr... or something. And I sort of instantly hated him. He came in, and instead of sitting at the desk like everyone else does, he... uh, sort of crouched on the floor to be face level (ish) with me. Sort of like when you kneel down to talk to a 3 year old. The second thing he did, that made me want to kick him in the face, was mumble when he spoke. I told him to speak up b/c I'm deaf, and he spoke to me like I was a fucking foreigner.

I really hate that about people! You tell them you're deaf, and that they should speak up, and instead they speak to you like you don't even follow the same language. I swear, if he hadn't been holding my folder, he'd have been doing the exaggerated hand actions along with it, that help no one. He decided that I'll get IVs at my next appt in January. And I swear if I'm doing better (like I am this time compared to my previous appts) I'll be tempted to refuse IVs b/c they've done fuck all for me, all year. And I can't help but wonder if they'd be more effective if I had more of a break between IVs. Oh well.

RIP Ginger. I can't take any more deaths right now...

Wednesday, 2 December 2009


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 they kept shifting me about from cubicle to a different cubicle to being on the ward itself. Anyway, my point is, I was on the ward, minding my own, when this boy, about my age, was kicking up an unbelievable fuss. He was kicking and screaming and making a tremendous racket, and his Mum was clearly trying desperately to calm him down. It turned out he was freaking out over getting a new long line put in (I think his current one had given up the ghost). Fair enough, no kid likes having to go through that. But, he was freaking out over being put to sleep for it. So technically he wouldn't even be awake for the ordeal.

He obviously subsided and got carted off and about 30 or so mins later he was back in the bed next to me and all groggy from being knocked out. Now, I may have been 11 at the time, but I was totally aware that this was a... hmm... slight over reaction to getting a line put in. I had them for 6 years before asking for a port. And the only time I was asleep when getting a line was when they gave me a bronc when I was 6, and decided to swap the venflon in my hand for a line.

It's just ridiculous.

Long year? Long post

This year has been weird. I haven't done anything. Haven't achieved anything. Some time at the beginning of the year these days, I w...