I'm aware I haven't updated the blog for ages! I forgot to do it after my last visit and then time just ticked on. My last newcastle visit was in June and showed no drop in lung function at that time - so that was 2 results the same, and the month before was very similar. I was feeling cautiously optimistic that we might be reaching some stability!
Instead of travelling to Newcastle for the July visit, I had lung function checked locally. Unfortunately this showed a drop in lung function from 0.97 to 0.89l (35%). However in the past I have noticed variability between Glasgow and Newcastle results, so I am very unsure if this is a real drop or not! I almost wished we had just travelled to newcastle! I have been feeling more breathless but also wonder how much the weather is affecting this at the moment. I love hot weather but I'm sure it must have some effect now my lung function is lower.
My next visit to Newcastle in August is for the end of study tests....so I will get the full extended lung function testing and repeat the 6 minute walk test (this shows how far I can walk in 6 minutes and whether oxygen levels drop). I expect it to be worse than the start of the study but really really hoping lung function is still in same range as June visit and Glasgow was reading low! They wont tell me whether I have been on the active drug or not, but I will be started on 'open label' drug - e.g I'll know I am on the active drug. It will have to be re-titrated, so I will know if on the lower dose I stop feeling sick! Although there was some chat in May about not being on the drug, I really do think I am. The sickness has been ongoing and very obvious if I take the tablets without enough food - it just seems too coincidental. The fatigue is also ongoing but I am getting used to the lower energy levels, although find it frustrating, as it wasn't that long ago I felt able to do most things!
Otherwise I am ok - not back at work and not sure whats happening with that until we have a clearer picture. Estelle is great and is starting school next month - so I have plenty to focus on other than health :-)
I will update once I have my end of study results :-)
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