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.

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