Sunday, 10 July 2011

moving forward

This week James and I have been looking at wedding venues, trying to choose a colour scheme (as I'm fairly set on a colour, regardless of where we wed, but he doesn't want to wear it...boooo) and also trying to decide if we can possibly afford to get married in summer 2012 instead of 2013, as his cousin is getting married the same weekend we had in mind (mid July 2013). She's a teacher as well which makes it's the only proper holiday of the year really. It's amazing how much work they still have to do at Christmas and Easter. Nightmare!

Anyway, yesterday we spent most of the day over on Arran looking at property for James and Marianne to rent. They settled on a flat on the waterfront in Lamlash, 5/10 minutes walk to the school, and easy to get to off the ferry. I'll no doubt be there quite a bit!

I had clinic on Thursday. I met one of the CF nurses while waiting for my rheumatology appointment the week before and she thought I should be seen because my sinuses have been so bad (still waiting for an ENT appointment). Anyway, turned out lung function was lowest since I transitioned to adult care, and although it's still high, they were concerned as I'm normally pretty stable lung numbers wise. As far as I can make out, the plan is prednisolone until Wednesday, plus 2 weeks doxy, then if no better after that it'll probably be IVs, although they don't really know what's causing it. There's a mutual refusal among the team it seems to consider that my symptoms got worse and it's been a gradual down-hill slope since the aspergillus turned up, but I think it's possibly so they don't worry me. I'm not worried, I'm just annoyed at antibiotics for 2 weeks, then a week or 2 off, then back on. Feels like it's been going on for ages.

I feel like a right pain though complaining when I'm seeing friends fighting for their lives...really changes things. I'm not upset or worried about my situation at all, I just hope it doesn't come across that I am.

Hope everyone is keeping well as can be <3


  1. Ooooh which colour are you thinking for your wedding! It's so exciting (but I imagine rather stressful?!) planning it all!

    I really hope that the Doxy works. Like I say, it used to work so well for me. Would they consider doing a bronchoscopy for you? That way they'd get a look in the old puffers, take gunk samples from each lobe and then culture them to find the culprit that's causing you all this bother! I was sending samples off constantly and all I grew was the same old Pseudo but my bronch showed a mixture of other bugs that they adapted my treatment plan to include drugs to help control those. I hope it doesn't come to that and this treatment plan works for you.

    Have they tried you on itraconazole? Works well if it agrees with you. Have they checked your IgE levels? Would it be worth running a CRP check to see whether it's infection related?

    Aaaand I think I've rambled enough! Hope you feel better soon!


  2. Hope the steroids and antibiotics work for you! xx