Wednesday, 6 February 2013

CF Clinic Memo

Had clinic today (5 hours of my life I won't get back, lot's of waiting) the verdict is I will continue doing what I'm doing, but if by Monday I don't really pick up, I will be booked in for desensitisation mid-week if needs be...

Sputum sample was taken for culture. FEV down to 49% (was 55) but with regular Bronchitol, physio we have no worries it will go back up. My doctor listened to my chest, was better than I expected, brilliant news is the bases of my lungs are clear! (my GP listened last week and they were not great). Shifting gears and putting in the extra effort has paid off in that respect, just have to keep it up for a couple of weeks intensely. We will do a CT scan of my lungs next clinic, I've not had any ex rays or scans since starting Kalydeco last may, that will be very interesting to see. I wonder if there will be any improvement in my lung condition?

Weighing in on the bigger issues of life: 55.5 kilos!! I was 56 a few days ago (I cut out curry every night) lost 500 grams yay! *ha ha. Yes, ironically in the twist of my Kalydeco life weight keeps pileling on. About a month ago I cut out bread in an attempt to stabilise it. My BMI ideal is 50kg -53kg. 55kg was reserve. 56kg is confronting! As I've said previously if my 'extra-ness' was distributed like Miss Monroe's then I wouldn't mind a bit, but it's not. I'm petite (SHORT) you get the picture! This weighty issue blows my mind, I've never worried about putting weight ON in my life?! Nice problem to have though after years of being very underweight...

So it's a tentative dodge of the IV bullet... I hope I can continue to improve. Very relieved and happy about it, for now. Will keep putting in all the effort hope it will keep me home... and hopefully will reach my goal since starting Kalydeco:

ONE YEAR FREE OF IV'S IN MARCH!! 

Thank you one and all for your encouraging messages on my facebook, really apreciate your support. Knowing your there when I need a kind word lifts me up... Here's hoping it's just a storm in a tea cup! xo









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