My Double Lung Transplant

Tuesday, February 1, 2011

In the Labyrinth

Zombie virus be tamed!
Labyrinthitis is thy name!

So yesterday saw the first day of my 18 months post-tx assessment. And oddly enough, my lungs weren't high on the list of 'how are you doing?'

My broken head was.

After much testing, watching me walk, looking in my ears, listening to my symptoms, it was concluded that I am suffering from Labyrinthitis caused by a virus. And for those of us lucky enough to suffer from the rare disorder Labyrinthitis, it can last for weeks and cause balanace disorders, nausea, temporary hearing loss, and all that fun kinda stuff.

So...yay me! At the moment, I feel like my face is being sucked into a vortex. I keep swaying to the left even tho I'm sitting.

It's been fun.

Today it took me an hour and a half to get out of bed, and as a result I took my meds an hour late. I stumbled into the shower and contemplated sitting on the floor for it, but realized that being dizzy and wet and trying to get off the tub floor whilst dizzy and wet is a bad idea, so I was a big girl and stood for it.

What can you do tho, eh? I'm trying hard not to complain but I really hate not feeling like myself. I feel like I'm perma-tipsy and if you were to push me i'd fall flat on my ass.

Um...

In other news, there's a storm of 'historic proportions' gobbling up half of North America, mainly the whole eastern seaboard. It's supposed to start later tonight and last until tomorrow aft. We're supposed to get between 20-30cm, and seeing as I have my bronch tomorrow, dad and I are going down to TO tonight and staying in a hotel so we don't have to drive in it. The worst is to be between 6 and 8am tomorrow which is when we'd be on the road, so to be on the safe side we're going down tonight.

Yay hotels!

Tomorrow's bronch will see me requesting extra knocking-out stuff, seeing as I had the misfortune of being totally awake for my last bronch and thus seeing and watching and feeling the procedure. Something tells me I'm going to be horrendously sick after tomorrow's bronch due to a combo of labyrinthitis and all the fun stuff that comes with the wearing off of anasthetic.

Can I get a collective 'yay'?

2 comments:

Seansjeep said...

On the plus side if you think about it people spend lots of money on alchol to reach the point of tipsy fall over feeling. You got it for free and without all the liver damage :) Just pretend youve partied like a rock star for a full month non stop! Good luck on the bronch tomorrow. Im staying in the north country where it wont get crazy with few inches of snow falling.

cfplanetgirl said...

a) Been following your blogs for long time so just wanted to say hi and thanks for all the entertainment :)
b) I am sorry to hear about your balance thing, I just had to comment as I had the same/similar thing happen to me and it was bizarre and devastating. Hard to explain to the rest of the world what it feels like to 'lose' your balance.
I just woke up one day and things didn't feel right, like the stabiliser was taken off my mental camera and I felt seasick everytime I moved because the room did not stay still (later learned that's called Oscillopsia). I was prodded, my brain was scanned - nothing unusual and 'probably just a virus'. I had finished 2x weeks of IV Gentamicin a week prior, and later found out this was much more likely the culprit, as Genta poisoning causes damage to the inner ear balance system by killing off the little hairs – and this throws everything off, as your brain is getting incomplete signals. And it's common too, google it if you are interested, there are entire websites dedicated to Genta poisoning. (and just mentioning in case you've recently been on anything-micine that you can link it to, even if the levels were safe like mine was).
Anyway, I got a lot better but it took long so you may need to be patient (yeah I know). Obviously I hope it will clear up quickly for you, but if it doesn't – you are not crazy. If it does NOT get better ask your drs for rehab for 'vestibular damage', they give you exercises to help with the discomfort and train your eyes to help with your balancing. I never had rehab as I didn't know what was wrong or what to ask for, but it exists and can help speed up the process of getting back to walking, driving etc. No meds helped for me. My balance is still not 100%, I need to concentrate in the dark and when I am really tired. But I don't notice it anymore unless I try and do something weird like ice skating or attempt to read while running. Feel free to contact me if you need more info or just wanna chat about inner ears...
c) Hope the bronch went well
Lene'