6 months on...sponsored by Kalydeco ;)

Had my 6 months kalydeco checkup last week at hotel wythenshawe. Lf was stable at fev1 2.75, weight had gone up to 67kg, probably my highest weight for the last 4 years. So all good, more of same really, which considering I've not had ivs or oral antibiotics in that 6 month period for the first time in I don't know how long, is pretty remarkable really. Six months on a lot has changed, I am now capable of physically doing a lot more in the day (i.e as a parent to two little terrors ;-) and I'm not as exhausted in the evening either.

   I talked to the doc about whether I was still culturing pseudo (I was) I also asked him about whether younger people on K would find it easier to get rid of tenacious bugs like pseudo and he said that the evidence so far was that pseudo was still very much there, just causing a lot less problems. I myself noticed that I was developing a bit of a cough in the morning without my usual nebs (I'd dropped off promixin for a couple of months) but when I went back on cayston there was an immediate improvement after a day or so. I have also switched from creon 25 to creon 40 and this has helped my guts, it has also helped me not have to take quite as many tablets with each meal, bonus! The nurses also mentioned the phase 3 trials for the combined vertex drugs for DF508 were starting soon so fingers crossed that provides a breakthrough for the majority of PWCF.

   And that's it really, I can now throw myself into crazy things like an all day snowboarding learning session, before Kalydeco this would have destroyed me, now it is still hard, but I am not on the edge of utter exhaustion from dropping blood sugars and Cf lungs like I would have been before. It's great stuff.
   Stop the press...sweat chloride test came back as 37, anything below 50 is classed as normal. My original (pre Kalydeco) score was 120!