Thursday, 29 July 2010

Knocked back down again

So I'm back in Gartnavel. Not much of a surprise there since its been about 6 weeks since I was last in. But this time I'm really not too great!

It was all pretty sudden to be honest. I was out enjoying myself shopping on Friday, at a hen party on Saturday night, having Dean over on Sunday, cinema with Kirstie on Monday. All normal stuff and really busy in terms of my life. Then BAM! Monday night I start struggling out of nowhere. Well at least we never faffed about with the 'feeling-a-bit-under-the-weather' and wasting time this time eh? :P straight to the point! Although I would have liked it if I hadn't dropped this low.

So Wednesday was my first time in an ambulance. Sadly though, I was too ill to enjoy this new experience (but then that would defeat the purpose of an ambulance) and spent the whole journey chucking up my guts into a cardboard sick bowl (facing backwards in a fast ambulance and while your feeling nauseous isn't the easiest thing to deal with) and of course, really struggling to get a breath.

I was brought up to the ward, blasted with 15 litres of oxygen, had a venfolin put in my hand to get fluids, given an x-ray on the ward, given an ECG (which is a wee scan of your heart), my blood gasses checked, normal bloods taken and bombarded with the usual questions. But I was so exhausted I can't actually remember much except for that. What I do remember is later on when I tried walking the 5 steps to the toilet, I nearly passed out and it took a good 40 minutes or so to get back to normal except for the pounding sore head it gave me which took hours to get rid of. This tiny wee toilet adventure resulted in more doctors being called up, another ECG being taken and worst of all, my dignity ripped right from me as I was told if I needed to go, I had to use the commode. Anyone who knows me will be aware that this wont have gone down well as I'm quite a private person. So sitting in the middle of my hospital room peeing into a bedpan did not make me happy in the slightest! Even getting a nurse I never knew to help me into my PJ's didn't seem too bad after that.

Today was pretty uneventful and I spent most of it sleeping. Despite that things have improved and I'm now walking to the loo on my own so tomorrows challenge is to get into the shower to have a good scrub and wash my hair. With a bit of help from a nurse though (might as well just give in and leave all the dignity to the side till I can afford to pick it back up).

Well I'm off to get ready for bed (on my own yey!). Not sure when I'll update this cause I have pretty much zero concentration right now. I'd be happier staring at the wall in silence for hours rather than playing with my phone, talking to someone or watching the telly. Does anyone else ever get that or am I just a bit special? Speak to you all in a bit and I'll post again if anything else worth talking about happens.

And apologies for this being so boring. Like I said, I cant concentrate so writing this is, to say the least, a bit of a chore right now.

Ciao!

Thursday, 22 July 2010

A wee bit of history.

Well firstly, Hello :)

If you don't know me already I thought I better give you all a bit of background on myself so that everything else will make more sense.

Recently I've been reading a few online journals of people who have had lung-transplants and its inspired me to set up this funky wee blog to keep my friends and family (or whoever else fancies reading it!) updated on the process of my own lung-transplant - from being listed, the waiting time up till getting the big scary call and the long recovery process - and to help raise awareness of my condition and organ donation. Also I've been told that writing things down can be pretty therapeutic, which should come in handy cause this part of my life will probably be the toughest bit so far! I've never been very good at saying how I feel or even talking about things so you'll need to bare with me if I suck at it to start with :P

So anyway I best start explaining myself then...

I was born with Cystic Fibrosis. I'm not going to bother explaining what it is or what its effects are because anyone who knows me will already know these details. And I'm guessing if you don't know me personally and are reading this then you'll also be aware of CF, either by suffering from it yourself or knowing of someone else who has it.
A few days after the new year of 2010 I was admitted into Gartnavel General Hospital with pneumonia and was stuck in there for 7 straight weeks. From that infection my health deteriorated rapidly and since then I've never really picked back up again. Being left dependant on oxygen 24/7, a very restricted lifestyle and with very little independence (which is pretty tough going considering I'm only 18 and everyone my age is out making their career possible, partying, dancing, running, laughing and generally just living). So the doctors decided that the only option to give me the possibility of living past the next 2 years was if I was to receive a double-lung transplant. Scary stuff huh? I'm just so thankful that I have that possibility and that, if all goes well, I could have a whole other chance at life!
I was sent for my transplant assessment down at the Freeman hospital in Newcastle which is where they perform the lung-transplants. After 4 days of tests and monitoring, I was told that I was going to be placed on the transplant list, providing the lab can sort out some lab-y type stuff involving a few nasty bugs I have in my lungs that may make the transplant a bit more difficult. So since its only been about 4 weeks since I was down there, we're still waiting on these microbiology results coming back but as soon as that's sorted my name will be added to the list!

Now I'll go back a bit further. Unlike most folk who are diagnosed with CF at birth or very early on in their lives I wasn't diagnosed until I was 4, which meant my lungs were already pretty damaged by this point. Ever since then I've been in and out of hospital for 2-week courses of IV's pretty regularly, usually every 8-12 weeks. Sometimes only making it home for 2-4 weeks but very rarely did I stay out longer than 8 weeks.
Despite this I never let it hold me back! I worked hard at school and done very well in my first set of exams. Annoyingly I never made it to the end of my highers or finished my Photography course at college because of too much time in hospital and falling too far behind (theres only so much you can teach yourself out of books and highers are difficult when your there 100% of the time).
I always had some kind of hobby growing up and was always pretty damn busy. Dancing, swimming, cycling, horse riding, ice skating, craft making, photography, volunteer work with the elderly, going to gigs, parties and everything else that all my friends were doing at the time. I even learned to played the flute to a pretty good grade for 7 years, the saxophone to a similar grade for 4 years and the piccolo for 5 years. Being able to play three woodwind instruments when you have a life-threatening lung condition is something I'm pretty proud of to be quite honest!

After spending my whole life fighting against CF to live pretty much normally, its quite hard to swallow the fact that now I only leave the house for a few hours on average about once or twice a week, only walk for about 5 minutes before having to stop and sit down to catch my breath, and struggle with even the most basic things like taking a shower (no jokes about me being smelly cause I do wash!), walking up the stairs and making my bed. I rely a lot on other people like my Mum, boyfriend Dean and best friend Kirstie to help me which isn't exactly what I had in mind that my life would be like at 18.

But now I have the hope of getting a second chance at life to be young, independent and better than I've ever been. Roll on those new lungs!!