Sunday, 30 August 2009

Good things.

There are very few times I'm glad I have CF. But now and again, nice things do happen. It's almost as if someone is saying 'Hey, sorry you got stuck with these sucky cf genes.'

At the top of my 'nice things' list, is obviously getting to go to London courtesy of Make-a-wish. (Although does it make me bratty if, when I look at the 'make a wish' site, and I see that they haven't included my wish in the 'latest wishes' section or the 'we had a wish' bit, I feel a little peeved. Hell, my wish was awesome, and I'd really like to share that story on the site). But, there is another totally awesome thing that has happened, that I haven't blogged about as I didn't want to jinx it. After all, it has only been confirmed in the last week.

I applied to a CF further education grant fund, called the 'Joseph Levy memorial fund'. Its where people with CF who want to pursue further education (i.e. college or Uni) can apply and ask for a grant to help pay for the course or things that they may need. I applied, and completely forgot about it, as it was much earlier in the year when I did apply, and they said that it wouldn't be decided if I would get a grant until June, when the trustees of the charity would decide who deserves what, and how much.

When I got back from London, sitting on the door mat, was a letter addressed to me (A fairly rare occurrence, as pretty much the only things I get in the post is my - ever stationary - bank statement, and letters from the hospital.) So, I opened it up, probably expecting junk mail, and found another letter from the Joseph Levy memorial fund, stating that the trustee's had awarded me £650 towards the cost of buying a camera for my photography course. Of course, this grant would depend on my exam results. However, between the time of writing the grant application form and meeting with the college, I'd changed the course I was going to be on. Now, my results wouldn't depend on whether I go in on the course (which meant that I was probably the calmest A2 student this side of the British Isles on results day) but I did worry I wouldn't qualify for my grant, as I'd applied under a different course.

The letter had stated to reply once I had received my results, to prove that I was going to be going ahead with the further education, and not trying to scam out a charity of £650, I guess. I wrote a letter thanking them for offering me a (conditional) £650 grant, and explained that whilst I was changing courses, I would still be doing photography, and in September 2010, I will be continuing with the photography course I had originally planned on, as this first year will ensure me the qualifications I need to be able to continue on what I had originally wanted.

Two days or so later, my Dad came into the room and said that the people from the grant had phoned. He had a kinda disappointed face on, and I said 'What, have they said no?'. Then he broke out in a massive grin, laughing, and saying that I got the grant. If you've ever watched 'Friends', it was like when Joey pretends he hasn't gotten an acting part from an audition. Then goes 'Yeah, I got it!'

I'm so, so pleased that I got this grant, as DSLR cameras cost a bunch. Since I found out I definitely got the grant, I've been doing research on the ideal camera to get within my price range, and the best place to get it (whilst the camera I've decided on won't change, the price does change from shop to shop.) I've decided on a Nikon D60, and I still have enough money from the grant to get a flash, spare lens, camera bag, memory card, filter covers and a spare battery pack. Then I've probably spent the entire grant, but that's what it was for! And I can start my college course free from worrying about a student loan debt from having to buy so much camera stuff.

Oh yes. I was talking to Bree on MSN before, and said that whilst I want to blog about something, I can't think of anything worth blogging about. Basically, the only ideas I had wouldn't even keep the most easily amused person paying attention. So Bree said 'Blog about me.' So Bree, who is doing abso-fucking-lutely amazing since having her double lung TX a mere three weeks ago, certainly deserves her own little section of amazing-ness. I'm so glad that your PFTs are so far doing really well, and you have, however long it takes, to see even higher numbers (for some people, I've heard that they hit over 100% in less than 6 months after TX, whilst for some, it takes a little longer. It probably has something to do with your rate of recovery or something.) I'm also glad that you can now run/skip/jump about and sing to your hearts content (or at least to your healing sternum's content) without getting out of breath or needing oxygen.

Tuesday, 25 August 2009

Long overdue London pics.

Here are the pictures of me in London! I know they're long overdue, but I just never got round to... uh... copying the pictures that I wanted from one computer to my laptop. I know, I'm a shameless procrastinator.

The link takes you to the slideshow of the photos. There's probably about 30 of them, so not as many as the scenery pictures. But these ones show me doing everything from being on the tour bus to eating in the Hard Rock Cafe.


Monday, 24 August 2009

Soon to be a college girl.

I'm an apparent horrendous blogger.

I got my A level results on Thursday. I did good enough to keep myself happy, and bought myself some new boots that I love. I didn't need my results to get into the college course I chose - the original course, I didn't get into because I didn't have a more specific photography A level, and apparently just 'Art' isn't specific enough. So I'm doing a different photography course which is only Saturdays, for about 6 months. There is a following course right after this one, for a further 6 months, and the qualifications I'll get from these courses, I've been told, will let me get into the course I originally applied for, in Sept 2010, no problem. So, I'll have Sunday - Thursday to doss about, Friday dedicated to my new job (Yessssssssssssssss!) and Saturday for college.

Oh yes, I got a job :) Its cleaning some holiday cottages in the country, about a 20 or 30 minute drive away, so not too bad. I'm getting a good pay for it, and start this Friday. It should be easily done - I'm the neat freak of the house, and I'm pretty sure no one has the guts to completely trash a holiday cottage in the country, so I'll be right in my element - Cleaning up, but not having to tidy up anything that resembles a bomb site (i.e. my little sister's bedroom, which I tackle many a time, but it sadly doesn't last for long.)

Oh, even better. There is a forum topic on the UK CF forum site, where someone had written that they don't believe that anyone on the site is qualified to give medical advice. Hahahahaha. For starters, if people didn't ask for help, advice, 'what does this seem like to you' or whatever else where people may give advice that is considered medical (e.g. when someone says something like 'Hmm, sounds like you have an infection') There'd be very little left to the site. Secondly, whilst I trust my CF team and their medical know-how and their diagnoses and so on, I wouldn't trust any random doctor (who would technically be qualified) if they were diagnosing an infection or tried to hack at my port, when they probably won't know much about CF. I have to admit, I don't 110% lean on what my CF team think about what a problem could be, after the whole pleurisy palaver. After months of rattling that got me weird looks when I tried to explain it, pain that was brushed aside with 'Oh, the IVs will take care of that' and being in hospital, with agonizing pleurisy pains, where first, the Doctors wanted to submit me for several tests to check if it was a gall stone. A few hours later, finally being told it was definitely pleurisy (which I had know for a week, thanks to Bree's medical know how), I felt like shouting 'I fucking knew it!!'.

Basically, the nub and gist of it is, is that maybe the people who have been through those things may have the upper hand in knowing how to help, or suggestions for your CF team when they're as clueless with whats wrong with you as much as that passing tumbleweed.

Monday, 17 August 2009

IVs and updates.

I don't have much to update on, or even anything to ramble about. I know that Bree is doing really well now, and has written her first post-tx blog post! I got my medical exemption certificate, which now means that I don't have to pay for my prescriptions because I have a port (even though not all doctors agree that a port-a-cath is a 'indwelling fistula device'). They haven't yet got CF as an official claim for medical exemption, but there's another 5 years till I need to get this renewed. I hope they get a move on though; its ridiculous how much we get from the pharmacy, and even more ridiculous if you have to pay for it all, seeing as you hardly asked for this illness.

I officially cannot wait to get these IVs finished. I had actually hoped they'd do a bit more for me (in other words, I'm still coughing probably just the same amount, but its less 'death rattle' now). than they have so far. I suppose I can hope that the last day or so will bring a big boost, even though I'm feeling pretty good despite the current cough (I don't think IVs will ever completely get rid of it now) or the left over pleurisy. Or, I can hope that the IVs will actually kick in after I've finished them. I've heard about that happening to some people.

I don't know if you've noticed, I've added another thing to my 'list'... I want a tattoo. Haha. I've always been iffy about tattoos; I don't like them much unless they're really nice, or there's a good meaning behind it, which brings me to what I want for a tattoo - I want it to be simple, just 'Breathe' and I want it on the back of my neck. Then its also easily hidden underneath my hair. I know some people wouldn't get it why I'd want it to say 'Breathe' but those people don't know that I have knackered lungs! Its not really a negative reminder of CF - its a goal I want to reach one day; to be able to breathe clearly and freely.

I've made a few doodles of it, but obviously won't be getting it done this second. For starters, if you're not going with you're parents, you're supposed to have ID to prove you're over 18 or 21, I forget which age it is. And the fact that I don't have any decent ID would put these permanent doodle plans on hold for a bit.

Wednesday, 12 August 2009

Oh Colistin, how I've missed you.

I started IVs on Wednesday (Colistin and Ceftaz) and I felt the effects of colistin pretty sharpish. After one day, they started to kick in, which also means that my IVs are swimming about inside of me and hopefully fixing what they can. However, I can't say I've missed the numbed/tingly mouth feeling or the dodgy legs that almost made me fall both up and down the stairs, but I think these IVs are definitely already working. I slipped off my mountain sized pile of pillows the other night and didn't cough myself stupid, so thats a sure sign that it's helping. Plus, when I did my lung function at the clinic, it actually increased. By about 2%, but hell, its an increase. This was even before I was hooked up to the first dose, and you'd expect them to be a bit on the crap side seeing how my lungs have been fairing these past few months (mainly pleurisy, but there was the fact that after my IV dose with mero, I needed IVs again a month later. I hate that stuff.)

Luckily, the side effects only lasted for a day and a half, and I was back to normal [eh... relatively] by Friday. The side effect period gets shorter and shorter each time I'm on colistin for IVs. The first time, it lasted the entire two weeks. It's virtually impossible to explain the crushing headache you have, whilst you have it, without people thinking you're insane, clutching your head in pain.

I also gained a bit of weight, and had a thoroughly boring talk with my dietitian about vitamins, and I realised that I'm on the same dose that I was when I was 6 (when I first learnt how to swallow tablets). And I also need my eFlow serviced. I've never had it checked in the how ever long I've had it. It still works fine, but I suppose I still need it checked. The little sticker on the bottom is completely faded, so I don't actually know when the check was due. But I know it was bound to be years ago. Whoopsie!

On Sunday, I'll be going to my friend's 18th. I'll be the only saddo there not drinking! I don't feel particularly bothered about it if I'm honest - most stuff makes my tinnitus [constant ringing in my ears] go really loud, and I hate the taste of beer/lager. Ick. Plus I need my head straight cause I'll be doing my own IVs. Also, I have no desire to put my liver out of whack right now. I mean, IVs are stronger than your typical daily tablets that your system also has to deal with, so there's no point in drinking on top of all the tablets and hardcore antibiotics that I'm taking.

I'm still checking for updates on Bree everyday. She's doing brilliant from what I know, but it's what you'd expect anyway. It is Bree, after all! The latest update on her carepages, from her sister Ashleigh was posted not long ago (Right now, its still morning in Canada) so as promised, I'll copy the updates here for any movers and shakers that are supporting Bree but don't have her Carepage site...

Hi Everyone,

Bree got the vent out yesterday! The nurses had her up and walking too, she looks so much better with that thing out! They are hoping to put her on liquids this morning and if all goes well solid food by tonight (her only craving so far has been for Earl Grey Tea). She should be moving to 'step down' today, so hopefully she can have some visitors by next week!

She's getting more and more coherent (only taking Tylenol 3 for the pain so she's not drowsy), so I'm sure she'll be able to read all your messages very soon!

heading back down tomorrow, so I'll have more to report then.

Friday, 7 August 2009



Bree told me on MSN, literally 10 minutes ago that she got the call 16-ish hours ago (about 1am her time) and she'd been waiting at TGH (her hospital in Canada) for the go ahead. Last I heard, things were positive and a very hungry Bree was anxious for new lungs!

I'll keep an eye on Facebook for any more updates. I swear I have literally no words. I was speechless when I found out, and there were lots of tears of happiness! Bree, you really, truly deserve new lungs!

UPDATE: Bree went into surgery at 7.30pm EST and came out at 5.15am. The surgery went well and she's in recovery. Bree's blog is here. Hopefully her Mum will be updating her carepage site soon. (To read the carepage site, you will have to sign up. Worth it for any updates though!)

Knew you could do it hun, I'm SO excited for you!

UPDATE II: Bree is awake, but still has the vent and other various tubes. Obviously she can't talk b/c of the vent but she can write :D Apparently she asked for a book and her cell phone! That just screams 'BREE' all over, right?!! Bree also said [ok, wrote] that she couldn't believe that it really happened. I'm not bloody surprised! It's so awesome and surreal at the same time. But here's the cool thing: IT REALLY HAPPENED!

YET MORE UPDATES: This was on Bree's carepage site, from Bree's sister. So excited for when Bree is back to chatting away on MSN.

Hi Everyone,

Bree is doing really well, the doctors hope to take the ventilator out today! She's in a lot of pain (lots of tubes), but they have given her a pain pump that she can use whenever she wants. She was able to sit in a chair yesterday for about 2 hours, so hopefully she can do the same today.
She is also writing little messages on a pad. The only thing she insisted on us bringing to her where her cell phone, and laptop! Hahha, not a surprise.

Thanks for all your messages and prayers, we printed off a bunch of messages that were on her facebook page and read them to her yesterday. She is a very lucky girl to have so many people that care about her!

I will try to post again tomorrow, Take care, Ashleigh (Bree's sister)

Wednesday, 5 August 2009

My CF 'firsts'.

Because I'm a shameless copy-cat, and have piss poor ideas for blog posts these days, I'm going to write a list of my 'CF-firsts'. Thanks to Piper, because I pinched the idea from her blog.

CF Firsts

Diagnosis: When I was 3 months. They'd done a sweat test to check but I don't know what my result was. They probably had an inkling from the menocum surgery I had at 1 1/2 days old. Y'know, maybe.

First CF Doc: I had two CF doctors in the CF paed outpatients - Dr O'Brien and Dr Spencer. They were never very nice to me if I'm honest. (Thus, the attitude begins...)

First CF Friend: My first hospital stay when I was 6, I was put on a ward bed, in between two older girls with CF. I would watch them swallow their tablets and their enzymes each morning, and they'd sit on my bed and talk with my and my Mum. I remember one of the girls was definitely called Lyndsey. And when one of the girls left the hospital, another CF girl came in and got her bed (and she knew the other girl too).

First time I *knew* I had CF: Probably the first time I went into hospital for my first ever 2 week course of IVs. During this two weeks I started a lot of new CF stuff - proper CPT (which hurt like hell and left me in tears), swallowing tablets for the first time (with fanta!), having IVs three times a day, and having nebulizer treatments.

First Nebulizer Treatment: Like I said, during my first hospital stay. I remember the stupid elephant tubing that would forever be falling out of the open window, and the big vibrating box that would make the corner of the TV have a weird colour. And I also remember having the old school tobra too.

First CF Outpatients Check up: Must have been when I was 6. In the beginning of the hospital file, there was a height/weight chart and mine only had information from when I was 6 onwards, no younger.

First Time CF Scared the Shit out of Me: When I was 14 and I found out the life expectancy, because before that, I didn't even know there was one. After finding out that people sometimes sadly pass away before getting anywhere near this number, I totally freaked.

First Hospitalization: When I was 6. I had a cough that wouldn't quit, and I couldn't get a word in edge ways because of it. I would literally be coughing every time I opened my mouth. This hospital stay started with a broncoscopy and I stayed on ward 7 for two weeks. And contracted pseduo from the CF girls who were on the beds next to me.

First Time I "Switched" CF Docs: When I went from paeds when I was 16 to the adult chest clinic.

First Time CF Felt *REALLY* Awkward: Um, I think it was probably when I came back to school after my first hospital stay. I was off for two weeks, and my class had each written a short 'get well soon' letter to me, and I read them in hospital. It was nice to see everyone again, but totally awkward having them know I was in hospital. Or, you could argue with the first time I saw my friends with a N tube stuck to my face, at youth club (I'd 'escaped' from the ward for the evening). Whilst my friends were OK with it, other kids weren't so accepting and took the piss mercilessly.

First Time I Went to an Adult Clinic: Early 2008. I was SO happy to be treated like an adult (and kinda floored in how much input I'd have in my treatment from now on)

First Time CF Really, REALLY Sucked: When I was put on pred for the first time. I was 11 and my face ballooned like you wouldn't believe, and I still can't stand any pictures of me like that. It took at least a year for my face to go back to somewhat normal, but thankfully, I retained a tiny bit of the chubby-face so I looked more normal rather than emaciated. But this was also because of the new G tube in my stomach, and coming back to school after 2 weeks in hospital again, was horrible, as I felt so left out. There's also the going deaf from CF thing too.

First Time CF Made Me Feel On Top of the World: One thing that I definitely remember is the first time I went for a run, the other month. I was bounding with energy after that 10 minute run, something I totally hadn't expected (I suppose that's why it took me so long to get started). Other times, like when you finish IVs and feel 110% full of energy, when my PFTs went up to 80%, not long after bombing down to 55%, connecting with other CFers and knowing that people really understand you, going on my Make a Wish trip (literally on top of the world in the London Eye!), and simple things like gaining weight, on my own, enough to get that effing g-tube out of my stomach.

First home IVs: When I was 7, my second dose of real IVs. My Mum is a nurse, so she picked up how to do everything-CF fairly quickly.

First PICC line: Probably along with my first real hospital admission when I was 6. Before this, I had the odd cannula here and there where I would get one dose of antibiotics and then they'd be done. I've got a few memories of me screaming my head off while some nurses and a Dr advance with a needle, and then getting my first Cabbage Patch Kid because 'I was so brave' (I bloody was - the Dr had purposely missed where the 'magic cream' had been and my Mum said she heard a nurse telling him off for that later on).

Ah well, hope you enjoyed that. If there's anything else you want to know, just ask and I'll add it on.

Monday, 3 August 2009

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...