Ok, start again...

It's gotta be said, i've let this blog start. After an enthusiastic start, i was kinda hampered by a course of IVs that gave me "severe renal impairment" (Whoopee!!) and ended up being admitted only to find i had a blockage in my small bowel - can happen in CF, called DIOS (don't ask me what it stands for!) - and losing 1 and a half stone in a week! Great!
Although, i did come out of hospital feeling the best i'd felt in 14 years (!!!) I'd lost so much muscle i was starting from scratch, and, yes, as soon as i started exercising again, the infection that had caused all this in the first place flared up again. Hurrah! So, we've had 8 weeks trying to work out what to do, including trying an antibiotic i've been allergic too since i was 5, and, yes, i'm still allergic too!! Still got a bit of a rash to show it.
So now what? Well, i'm doing ok, but breathing is bit crap, got no energy, and basically back at square one! So, tomorrow, i'm going to call the hospital and try and get in for some more IVs (of my choosing, this time!) and start again. We have a couple of ideas up our sleeves, but i really want to get fit again before we "try" anything else...

Wish me luck! :)

Exactly why we need a CF unit!!

Well, i started IVs on Tuesday at home. Not ideal, as the antibiotics i'm on are Tigecycline, which makes you feel nauseous, and Colistin, which makes you itch and like your heads full of cotton wool. The plan was, all along, to have these antibiotics in hospital, but with my skydive getting closer, and no beds, it was just important to start the drugs. So, we started at home with the promise of admission when a bed became available.
However, the room that should have been free Wednesday was being decorated, so i had to wait till Thursday, and by thursday morning someone of ICU needed the bed so i was left without one again! Not impressed.
The problem is though, this is happening all too often. We currently have 4 allocated rooms for adult CF patients at Nottingham's City Hospital, but most of the time there are about 20 patients who need IVs, and maybe half of them need to be admitted, but can't be accomodated!
What pisses me off is Labour spent (borrowed!!) all this money to build flash new hospitals, but we (and, might i remind you you are born with CF, sturggle with it all your life, and then around 99% of patients die of it!) have to wait 20+ years for our own place!
I'm feeling shitty, i wanna throw up all the time, my skin itches like hell, and i can barely stand bcs i'm so weak, yet in 3 weeks i'm jumping out of a plane to raise money for our new unit!! God, we need it now more than ever!!

Please, if you can, give at www.justgiving.com/nottinghamcfskydive and spread the word.

Now, i need to wake myself up and do my night time IVs. Yes, no one comes to do them for me!!

To have IVs or not to have IVs, that is the question!

Normally i'd put off IVs as long as possible, not only because i hate waking up at 6am every morning, or because my already non-existent social life grinds to a complete halt, but also to try and save them for when they're absolutely necessary.
Being post transplant, i only have a couple of bugs in my lungs (even if they are pain in the ass ones), and orals generally do the trick. But, in just over 4 weeks time, i'm jumping out an aeroplane to try and raise money for Nottingham's new Adult CF unit.
So... I've been feeling like crap for a month now, had a course of orals which did little, and still coughing up shit. So, why is it, the day i need to go to clinic and hash the idea out with my consultant, i actually feel the best i've felt in weeks?! Ok, i'm still coughing up crap, and i'm puffing and panting, but what to do....?!! Arrrrrgh!

Colds suck!

I always get looks when i say colds are worse than chest infections, but think about it.  A chest infection, you feel crappy, but once you diagnose it, you get on the ABs and start to feel better.
Colds hang around, make you feel congested and stuffed up, zap your energy and there's B all you can do about it but wait for it to be gone. Plus, they often end up giving up a chest infection!!!

A little about me...

I was diagnosed with Cystic Fibrosis when i was 2yo.
When I was a kid, the life expectancy for people with CF was between 18 and 25 yo.
When I was 23, i got a double lung transplant.
I'm now 38, and not giving up any time soon!
The Trick Is To Keep Breathing...