Friday, 17 February 2012

we have a plan

Bit of a ridiculous time of day to be posting a blog, but I've not been sleeping too well and have been up since 5.30am...

I went up to clinic yesterday (and yes, that means I've been there every week for the last few...boring!) to get my treatment plan for this steno that's decided to make my lungs it's home. They told me they don't really know what affect it has on CF lungs and that they don't always treat it, but considering I'd had marginal improvement on IVs but still looked (and felt) a bit like the walking dead, they decided to treat.

That means 3 months of doxycycline and septrin, as well as being put back on colomycin nebs. Fortunately I've had colomycin before so didn't need to get a test dose...although after my first dose I was so tight and wheezy that I thought that might've been a huge mistake, but the 2nd dose wasn't too bad.

Surprise surprise, my weight was down again. Thank god my BMI is still within range at a pretty decent 21.5 or they'd be going mental. I suppose that's the only advantage I can think of to having been a bit overweight 2 years ago.

I've decided to speak to liason psychiatry, not for a diagnosis (as they were keen to point out yesterday) but for coping mechanisms. This is not all related to CF, there are some other issues I think it would be good for me to get off my chest, but I don't like to be a burden and hate talking about things that will have me and/or other people upset. I spoke with a few people about it before making the decision, which helped put my mind at ease about asking, and actually it wasn't as bad as I had imagined it would be.

Which brings me on to facebook. I said goodbye to it again last week, after only starting it up again 2 weeks before. I feel better being rid of it...something about it when I'm not feeling good, and it's just easier to delete it and get back on it when I feel better.

I hope everyone is feeling well x


  1. I'm glad they've decided to treat it. It wouldn't be fair to leave you feeling so rubbish.

    Watch for a rash with the Septrin (if you've not had it before that is). A lot of people are allergic to it apparently and react with a rash. Hopefully you'll be absolutely fine on it though.

    I think asking to go and see the psychiatry team is great. It's important to get things off your chest and they'll be more than happy to listen. Hopefully they'll offer you some good coping mechanisms too.

    Miss you on facebook!!

    Hope you're feeling better soon. xxx

  2. hey
    hope you get on well with liaison psych - they are all really nice in that team. Fingers crossed the antibiotic regime gets you tip top.
    jac x