65 Roses?....A beautiful way of saying Cystic Fibrosis, however does not make CF any more beautiful. My wish is to be standing untarnished, unbreakable, breathing easily.... A blog that is about my day to day life, as well as trying to cope with my illness Cystic Fibrosis. There will be no hold backs just me...out in the open, hope you enjoy! xXx

Friday, 18 October 2013

The waiting game

As expected after a bad few nights I had to start IVs

I went to my hospital appointment for my allergy testing Wednesday, but arrived an hour earlier for the dr to see me, have an x-ray, lung function and blood tests.
After the review the dr decided the conditions were not optimal to perform allergy resting.
My lung function was down, as was my oxygen levels and my heart rate and temperature were high.
To be allergy tested against an antibiotic you are thought to have previously had an adverse reaction too, you need to be in the best health possible for you as your immune response can act different with an infection in situ
With all my results indicating an infection it was decided to abort allergy resting and start IV antibiotics straight away. Luckily they felt I was just well enough to do Ivs at home, an option I always prefer. 
I was started on 2 antibiotics, Aztreonam and Tobramycin

***GROSS DISCRIPTION OF SPUTUM *** skip to next paragraph to avoid lol
My sputum has been extremely difficult to shift over the past few days, so I knew it wasn't going to be a nice looking sample (like any sample can actually be classed as nice but anyway)
It was a very thick, dense, dark brown colour, resembling mooshy mud, it also tasted a lot like copper 
My team are expecting it to come back growing a different bug to my usual, so they have said to expect a chance of antibiotics next week, once they know what was cultured.

Since Wednesday I have continued to have temperatures which really is the thing that's making me feel so groggy. One minute I am so so cold, the kind of cold that goes to your bones and no amount of layers can warm you up, the real depth of winter cold that you think will never pass, and the next I'm stripping of because I'm drenched in sweat, having to change clothing because I'm wet through. It's leaving me feeling dehydrated, sleepy, weak and a bit miserable.
Oxygen is something I only tend to need on movement, but my chest has been feeling quite awful when I'm trying to sleep. I'd wake up coughing and gasping for breath so neither myself or Tom have had a good night sleep all week. 
Last night we made the decision to fill up a tank and i would sleep wearing O2, a decision that's not always easily made as having to much oxygen can actually cause damage also. It's different effects of being to low but something not to be taken lightly.
I'm pleased to say it was the right decision as I slept solid for 5 hours without feeling breathless, and didn't cough once, much relief to mine and toms exhaustion levels. Today is the first day i haven't woke. Up with a crippling headache, so for the next few nights ill continue with O2 Untill the infection starts to ease up.

This is the part of my life which is a huge waiting game, and a time I find most frustrating. I have had to cancel meeting two friends and a coffee meeting I had planned with my co-host about our fundraiser.
All plans are on hold until I can actually get out of bed.
I HATE not being able to do what I had plans and its a real test of patience to get me through these times. 
When I'm ill I also tend to develop a real clumsiness, I misjudge distances of cups etc so end up knocking them over instead of picking them up, then when I do pick them up they usually end up on the floor. Just an hour ago I managed to spill a cup of hot tea down myself and the sofa, kick Maggie then elbow her, poor pooch :( 
She's learnt to take the rough with the smooth and she always gets extra cuddles when I somehow injure her :) 

I think I have explained before, or at least tried to, being a let down is something I will never come to terms with. I know friends would never use the term 'let down' but more often than not, ill text to cancel plans we had made simply because my illness is so spontaneous I can go downhill overnight therefore affecting any plans made. I know they probably accept this way more than I can but its a learning curve ive not yet learnt. 
Seeing my friends is now usually a text from me saying "are you free right this second, I'm well for a bit" unfortunately most, if not all, have full time jobs and/or children and of course busy life's so it's catching them at the right moment for a last second dinner date. Our last minute dates are often ones that I enjoy most because its unexpected and a treat, and we always have lots to catch up on. 
Me and Frankie are by far the worst, we'll go for lunch, I push my luck and suggest shopping as well or we'll end up on a random drive on one mission or another. We always have a giggle and we do get up to mischief. I can't divulge our mischief or our own 'friend language' haha 

But for now I know I need to rest up and recoupaerate then I can enjoy the things I have had to put on hold for now.

One final thing...I was in yesterday's Basildon Yellow Advertiser, Thursday 17th October, it has details of The Cystic Fibrosis fundraiser I am holding. So if you could pick up a copy, have a read and come along to the event, every little bit of support and donations will be gratefully received and of course go to helping the Trusts vital research to improve and create new treatments to help people like myself.

Thanks for all the support to the people already on board, by donating, liking, sharing and supporting my blog and event details, and an even bigger thanks to my co host Leanne who is actually doing a hell of a lot more towards it than me at the moment :)

More details of the event will follow on future blogs 

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