Wednesday, 23 January 2013

CF picked the wrong lady to mess with ;)

Hey all! 

Despite all the tissues, coughing, phlegm, IVs and nebs I actually think I'm on the mend! I went back to hospital yesterday and they popped me on another IV as I'd reacted to 1 so stopped it and its not enough to only be on one IV! So stated on the Coly but now I've started Timentin which I haven't had for over a year so I'm hoping it'll do some good :) 

Only problem is the Timentin is three times a day which is a pain as I'm now also back on my month of Cayston (neb) so I've got tonnes of things to do, how exciting.. I'd do anything to go back to work, I miss it loads and I can't watch anymore day time tv or I'll cry! 
My lung function had increased when I went back yesterday, by half of what I had lost which was a surprise. I am determined to get back the other half by next Tuesday and come off IVs! Still getting quite breathy when walking about and doing things but I am able to do more which is a promising sign :) 

So lets hope my next blog is me coming off IVs! Apparently Kalydeco should be coming in the next few weeks so keep checking to see if I've got if and how I'm doing :) I need it now so much, it's so close I can almost touch it..just needs to come quicker! I'm very impatient ;) 

I've made a list of things I want to achieve this year, especially after Kalydeco when I will feel more well to achieve some of them. Some are silly little things and some more important so we'll see what happens and if I can manage to do them all! 

For the next week I'll be doing my 6+ nebs a day, IVs 3 times a day, physio (which I really do need to step up on) and hopefully this chest infection will realise its not wanted and will leave! 


  1. I'm having to go back on IVs soon, for three months this time so ill have to so it from home which I've never had to before :( so nervous!
    What kind of physio do you do hun? I definitely need to step mine up too but it's so hard to find time. How do you fit everything in? Are you a good multitasker :)
    Glad to hear you're on the mend!!
    Natalie xoxo

  2. Ah you'll be fine! I've nearly always done home IVs, luckily the ones I get delivered are premixed and I'm bottles so you just plug them in and let it do it! Have mixed them up and pushed them through by myself before too and put in drip bags before as well, feel free to add me on Facebook & inbox if you ever want any more info but I'm sure you're hosp will let you know everything :) I do altergenic drainage for physio and occasionally percussion when I'm poorly. Yeah I find it hard to find the time when I'm well. Haha yes I end up multitasking doing IVs, nebs etc!
    Thank you, oo will have a look at your blog! Xx

  3. Also Natalie, how did you make your header and signatures? They look lovely! Xx

  4. Aw thank you so much sweetie!! I'll track you down :) it sounds scary!!
    What do you mean by altergenic drainage? Is that by using a PEP valve or something?
    hehe I have a smart brother - that's how ^.^ I probably could give it a go if I had the software and the time! He just used photoshop :)
    have a look at though cos they have lots of ways to edit photos and add text etc which you can use to make nice graphics too :)
    N xoxo

  5. Altergenic drainage is a cycle of breathing followed by huffs. You do a small breath, breathe all the way out, medium breath, breathe all the way out, huge breath in and all the way out then a huff. Repeat cycle a few times, have a break, do it again :)
    Ah! Very clever haha. I'll have a look at that website, thank you :)