Outpatients

Had an outpatients appointment today. Weight is 56.5kg, sats 98%. All good so far... fev1 45%, can't believe it, I'm gutted, totally gutted. The doctors seem to think it is still good because my highest fev1's last year were 45% apart from my 'fluke' 52% as they called it! Well I don't think it's good, I'm pissed off even though I knew really that they would be lower. I'm wheezy, coughing loads up, lethargic and my lungs feel sore. You may wonder how lungs can feel sore? Well they do! If you have nice lungs that don't like to try and kill you then you probably won't understand how a lung can be sore! They feel all delicate and when I cough and stuff I feel like they are throbbing, like when you have a headache. So anyway I am going on some IV's.

The doctor asked me what IV's I wanted. This is new to me! I was like 'erm some that work rather than the crappy one's you keep giving me'. We concluded I am going to go on tobramycin and meropenem, this is a new antibiotic to me so we will see how it goes. You have to make it up yourself (it doesn't come ready made in an eclipse) which I don't like the sound of.....but if it works I don't care! I managed to negotiate when I will start my IV's. You see I'm going out on Saturday with all my friends and it's going to be brilliant, I've even got a new dress (although I need to get it in a smaller size so I hope they have it!). So I can't be cancelling that because of something so silly like IV's! So I am starting my IV's next week, can't wait...... I just hope on this night out that people bear in mind I am ill enough to require IV's and don't make me walk around outside in the freezing cold for long periods of time!

I also spoke to the physio about my hunching shoulders that I have become paranoid about, plus my shoulder is starting to hurt because of it. She says it is normal for people in cf to have hunched shoulders and I'll never get rid of it totally but she did suggest when I do my acapella (because I think the acapella has made it worse) to sit with a rolled towel in between my shoulders and this will make me sit correctly and put my shoulders back and loosen my muscles so it doesn't hurt to pull my shoulders back. So I will give that a go. I also told her my never ending disk on my i-neb has run out.... guess it's not never ending! Stupid i-nebs need a disk in them to work and the disks usually only have so many goes and then they run out and you need a new disk. Well I managed to get a never ending disk when I took part in a study but sadly the disk decided it would cease to be never-ending on New Years day, the physio said it has happened to everyone. I have a load of spare disks hidden away anyway, once they run out she says to let her know and she will get the company to post me one each month. I did ask if she could smuggle me another never ending disk, but apparently not. Damn it!

Lungs are freaking me out at the moment (yes you read that right...!). I had some weird dream on Friday night about lungs, lung transplants or something, I can't really remember. But now I'm freaked out, I keep thinking about what it feels like to have someone else's lungs as your own and it's freaking me out! I don't mean to offend anyone who has had a transplant or is waiting for one, but whatever I dreamt has seriously messed with my head. I even had some sunblushed tomatoes in a sandwich and they looked like little slimy lungs so I couldn't eat them. What the heck it wrong with me? The tomato thing even makes me laugh at how stupid I am when I think about it, but at the time it totally grossed me out! Why am I even dreaming about this stuff?!