Wednesday, February 3, 2016

Colour update

To start off with... going to be in hosp at least another two weeks since this past Sat, meaning hopefully will get out of here on about the 13th of Feb if all goes well.Stupid Pseudomonas was resistant to the Maxipene so IV antibiotics changed to Taziject. I'm getting this continuous (2g every 8 hours). Also on oral Augmentin, Purbac and Zithromax. Prednisone down to 30mg a day now (have also been treated for acute rejection while I've been here). At least much better than the 125mg I started on. Still making sugars crazy though, so annoying.

I will also be inhaling one of my pre-transplant antibiotic friends going forward (starting today), Colistin, Need to get an e-flow nebuliser! Initially I was inhaling Tobramycin but the Pseudomonas is resistant to that too apparently. 

Went for lung function yesterday. When I was admitted FEV1 was 41% and in the walk test O2 sats dropped to 78% or so. Yesterday FEV1% was 38/39%, SATS dropped to 80% but walked a bit further. So not much of a change but at least lungs have recovered from the incident. O2 sats on room air are 92% so managing without O2 during the day, Trying to move around as much as possible and have been climbing stairs slowly again since my drip has become more portable thanks to the CADD pump as seen below. Yay for small freedoms.

Been enjoying the colouring in... have books to read and crotcheting to do as well, but so far this has been grabbing my attention the most. Entered this competition as well which I think is pretty cool.... for Rare Diseases SA (I think CF falls into that category? Not 100% sure). Anyway, if you're into colouring in then support them!

Click here for the compitition 

Have had nice visitors, Louzanne's mom, Jessica, amazing family members as always. Couldn't fall asleep last night, too much stuff to think about :-( Hopefully tonight I will do better. 

1 comment:

Sherry Boyle said...

Thanks for the update on your progress, Alice. Your artwork is so beautiful! You are very talented. Am keeping you in my prayers.