Sunday, 1 April 2012

Going around in circles :(

Not literally, I haven't lost the plot that much yet! But I am starting to wonder if my lungs have... my lungs seem to be jumping from one extreme to the other at the minute, one minute I'm blowig out 66% lung function (which is great for me) to then blowing out 40%, which is bad for me...the only time I seem to manage to blow out these higher numbers is when I'm on high dose steroids, which
although they are a god send and I've come to like them very much (wasn't very keen on them in the past), they aren't ideal... they weaken the immune system for starters so although they help with
the inflammation they make me prone to more infection which when  you're already prone to infection isn't good...

At the minute the circle is, my chest gets very tight/wheezy/irritable (to the point where I can't clear mucus from the top of my lungs) I then get more infection because the mucus is trapped in my lungs
because it's impossible to clear when my lungs are so inflamed, at this point my lung function is rubbish so I get put on high dose steroids, which then get reduced each week, so I start off with 30mg, then 20mg, then 15mg, then 10mg, and I'm suppose to eventually get down to 7.5mg... 7.5mg still hasn't happened yet though because as soon as I get down to 15mg I start having problems with tightness and wheeze again.  I think I've had about 3 or 4 courses of steroids now, I've been on various doses since January anyway, which is unusual for me as I've only ever had 2 courses of steroids in my whole life prior to this...  So I guess now I'm starting to wonder where does it stop? surely it's not possible for me to just keep having doses of steroids constantly then going back to square one each time they get reduced? I don't think it's possible for me to stay on the 20mg that I need in order for my lungs to function as they should?  Doing chest physio at the minute has to be the most frustrating thing I've ever had to do, I can feel the phelgm there on the top of my lungs just stuck and refusing to come up, it's like it's teasing me, it's saying hey I'm here but I'm not coming up... I must admit I'm getting tired of doing so many nebs just to try and keep my lungs feeling reasonable and physio is taking me at least 35 minutes at the minute, because only very small amounts will come up at a time and I can feel there is loads there, I so badly just want it to come up so it's not stuck there causing more infection, but instead all I get is tightness and wheeze.
I think the main reason for this is my aspergillus, which for some reason I've started having problems with now, even though it's never been something I've suffered with in the past, that's the question I keep asking myself at the minute, why now? How come my lungs have only now decided it doesn't like something that occurs naturally in the environment?  I know there's probably some complicated medical answer to this but to be honest I don't really care, I want my lungs to stop
throwing strops like some spoilt child and to just get on with it..
I've also been found to be growing MRSA too but I've been told that this is no different in terms of the damage it causes then normal Staph, the only difference is there are less drugs that can treat it, so I'm unsure of what part this might be playing.  It seems when my lungs are good, they are really good, but when they are bad, they are really bad! 

So now I'm a bit unsure of what to do really... Do I get IVs, even though the infection is only really secondry to the inflammation caused by aspergillus, would they even help that much if the main problem isn't solved? Do I ask to get my steroid dose increased again? Even though when they are decreased again I will be back to square one once again... I'm frustrated and really want an answer, but at the same time I know my CF team are doing the best they can, they don't have the answer either, it just seems a bit hopeless at the minute and I just feel like I'm going around in circles with no end in sight... The annoying thing is I know apart from the problems caused by aspergillus my lungs are actually really good, which is shown when I'm on steroids, it's just all the inflammation and trapped phlegm that's causing all the problems and I'm starting to worry this is going to start to cause actual damage to my lungs and then they wont be good anymore... So all in all I'm feeling a bit fed up and starting to wonder why I'm putting in so much effort with my meds when I'm getting minimal results back from them, I don't mind doing them when they work, but spending hours doing them just to be in the same boat afterwards makes me wonder what the point is..

So I'm very sorry for the moan (I know alot of people are in a much worse situation, but if I don't start worrying now it might not be long until I'm in a much worse situation too).

On a bright note I like the lovely weather we've been having recently :) It's been nice to sit out in it soaking up some vitamin D, I'm hoping it stays this way for a while so I can do a family BBQ..

I love my glasses, not only good for the sun but they hide my dark circles under my eyes (and they're spotty!... win win :)

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