Wednesday, 18 July 2012

Clinic, podhaler, and CAKE

Just typical. The day I have clinic, I have the WORST COUGH EVER. Today, fine. Brilliant. Nothing there. Clear as a mountain spring. Well, sort of. But yesterday I was all a rumbling-and-a-wheezing-and-a-gunky-and-a-spluttering. Did a terrible lung function (40% and 60% PAH, normally 60% and 75%), sats were 92 (they're always 98) and, well, it was a disaster. I saw my favourite consultant Dr Bilton, who basically got me on the road to liver transplant a few years ago, and who's buddies with all the team up at Addenbrookes. I told her how Chelsea and Westminster 'stole' my DNAase, and haven't had any for 2 weeks, but that i'm finally able to collect it from my chemist tomorrow (today). AND how I stupidly (not so stupidly if it's shifting shtuff) had a hypertonic saline (yuk) which has just unearthed a whole heap of hidden monsters from the deep, and that are refusing to calm the fuck down. Not in those words. She's given me 5 days to get better with Cipro too, otherwise.... IVs. Oh how my heart sank. Basically, if I have an inpatient stay because of a bad chest and IVs, i'm taken off the list. And today i've hit the 3 month milestone. I do NOT want to be off the list at this moment in time. I've hit the average wait time! Equally, I don't want to go ahead with a transplant if i'm run down because that wouldn't be wise at all, so my only option is to work my boney butt off to kick this cough. A cough that today, seems to be non-existent... Still, knowing coughs, it's probably lurking in the depths, fooling me into believing it's gone, when in fact it'll pounce when I least expect it and come and bite me in the skinny bum of previous sentence.

Also, I got my tobi podhaler! During my trial run yesterday it made me cough like hell - tobi through the eflow is awful (that's why I use my fat old machine instead), but this is the same potent powdery strength in one inhalation. I say one, but actually you do 8 breaths - 2 breaths for every capsule. So it's not quite as quick as a puff of a blue or red puffer (or brown or green - I know they exist), but still, no washing! No sterilizing! No fridge! No nebuliser! AND they deliver it every month to your home! Incredible. For those not in the know, it means about an hour kicked off my daily routine. GET IN. My dilemma now is whether I continue with my colomycin neb until the end of the month, or succumb to my excitement and start the podhaler NOW! I think I might wait. I'm a good girl you see... sort of. The thing is, now it looks like I leave a sex toy round my house, and i'm totally nonchalant about it. Good girl gone kinky.

Pictured on bed. See what I did there?!

Today I have a dead arm as a whole load of gloopy vitamin A was injected into my poor wee arm as well yesterday. It's a painful jab because of it's thick consistency - you can feel it just sitting under your skin like a fat man at McDonalds, knowing he should probably get on with his day, but being too fat to actually move anywhere. Or anywhere fast, at least. Eventually the orange flubber vitamin disperses and the acute achey pain subsides, but you're left for at least a whole day with a dull ache - a disturbing memory of sludgy fat man at Maccy D's and his jiggling fat rolls. But at least things will be brighter from now on. Literally. Night blindness is a frickin' nuisance. Everything looks dark and orange. You can't walk about at night, you can't see stars, you can't see much to be honest!

Now i'm off to finish my Victoria sponge cake. I didn't make it, it's from Sainsbury's. But it's taste the difference so I like to think it's been lovingly made. That counts as working hard to fight an invisible cough, right?


  1. Ah no, hope you don't need IVs! Get better sooooon.
    I've never heard of a podhaler before! Sounds amazing, I'm on tobi but I do it on an old fashioned noisy nebuliser. Takes way too long.
    And I love how you called inhalers puffers! I do and people are like what? Puffing is way more gangster than 'inhaling.' I have a brown one and I used to have a green...I would love a pink one. xxx

  2. How are you donig with Podhaler? Curious to know if this is making life easier now

    1. It's making life so much easier! I'll write a post about it v. soon - I find i take my tobi much more than I used to via the neb, which is obviously a great thing. It's strong and quite harsh, but slowly getting used to it and finding the right technique to make it better.