Up The Farway Tree

Hope

I was in newcastle yesterday and I felt the news was a bit more positive.  There had only been the tiniest drop in lung function by 1% to 37%.  This is the smallest drop since I was diagnosed with rejection.  There had been previous discussion about some people stabilising under 1litre lung function (mine is now 0.96l) so it could be following this trend.  It could be related to the trial drug - although interestingly the consultant I saw yesterday was less convinced that I was on it.  He thought the ongoing nausea might be explained by one of my anti rejections, which was changed one month before the trial.  He would have expected more stomach upset from the trial drug....but of course not everyone gets this, so who knows!!  He also did emphasise that this is the first trial of this drug for rejection so we actually don't know at all if would have any effect.  Either way, I finish the trial in August and will be put on the active drug at that point so will soon know if I have same side effects.    One of the biggest issues just now is fatigue and exhaustion - we are trying a different anti sickness medication to see if that helps, because the one I have been taking can cause drowsiness.  Fingers crossed this helps.

I saw occupational health regards work and they agreed that I wasn't fit to be at work just now.  I'm finding it hard enough to get through a day doing very little without feeling exhausted.  I'm definitely more breathless now, but of course I've been much worse in the past.  I've not given up on the idea of going back though and hope that if I get some stability, and can sort out the fatigue, then I might be able to work something out! 

I'll be back down in June and keeping everything crossed for only tiny drop ....or even better, no drop.