Clinic & Plan Of Action!

　
I had clinic today and had many issues to bring up with them since last seeing my Cf Team just before Christmas Eve.

I had my gripper accessed and have started a fortnights course of iv’s. Colomycin & Tazocin. Mereopenon is usually the only iv that tends to make a difference to my chest, but as I have been on it so many times right up until Christmas, my consultant didn’t want to risk me becoming resistant to it.

My Iv's

My weight was 50.4kg and I tried one attempt of lung function which was an absismal 0.74 (around 18-21%) which really took it out of me.

My physio made me stand up and attempt to walk with the sats monitor on, I made it just over a metre before coughing my guts up and needing to sit back in my chair. My heart rate rocketed and sats dropped, so the team have decided now that although I have my oxygen at home, it is definitely needed on exersion, when I move to the bathroom / kitchen or leave the house, and have ordered a small liquid oxygen cyclinder to have 4 hours worth of O2 a day when I’m out and about.

As for my tummy problems, there is only a small chance that it could be one of the bugs going round. I’m going back up next Wednesday and will have to do a ‘sample’ if I continue to have bad pains etc. For now, I’m increasing my creon enzymes which I take with my food to see if that helps.

I’m also starting some more ventolin nebulisers rather than just taking the inhaler. (the other nebs Cfers usually have such as hypotonic saline & Dnase really irratate my chest so I don’t have them)

When I go back up next week, I’m seeing my physio again and taking my V Pap machine with me to see if the pressure needs altering. This machine is what I use for physiotherapy, it forces air into your lungs as you breath in from the mouthpiece. Similar to what you would have seen on Kirsties documentary, that horrible mask strapped to her face to give her lungs a little rest and aid her breathing, I’ve had this too, but my V Pap is through a mouthpiece and not used at night whilst I sleep, purely for physio purposes.

An exhausting day, but over all quite a good one where a lot was talked about and resolved.

It’s two weeks today I will be in Harefield. I’m really nervous now, just scared about what they will say. I think we can safely say that I haven’t improved at all since I was seen in November, if anything I’m worse.

We’ll just have to see what happens on the day….