Update

I've had a couple of Newcastle visits since my last blog.   The end of the first 6 months of the study was last month.   That appointment did confirm the Glasgow result, which had been a slight drop from July.   However reassuringly yesterdays result was the same as August, so there hasn't been another drop in the past month.

At the last appointment I was put onto the active drug - having been taking either the drug or placebo for the past 6 months.  Even the doctors don't know what I was on.   However I had to go back to the starting dose and retitrate again.  On the lowest dose, the nausea and fatigue were so much better, then when I went to the middle dose the nausea came back, and on the high dose the fatigue also became extreme again.  It's so overwhelming - a couple hours after taking the tablets I'm ready to go to sleep and feel awful!  The meds are three times a day, so this isn't ideal.   It does confirm to me that I have been on the active drug all along, as the side effects are identical to what I've been experiencing over the past 6 months. 

At yesterdays review we discussed these difficulties.  The doctor felt that overall my lung function has been more stable in the last 6 months.  It has still slowly drifted down but SO much slower than the previous 18 months and some months there hasn't been a drop.   There are a potentially a few reasons for this - it could be the trial drug, it could be late effect from radiotherapy and it could simply be the natural history of chronic rejection, which tends to become more stable at low lung functions under 1litre.   Given that it might not be the drug that is helping and the fact the side effects are impairing me more than my low lung function, we have decided to reduce the dose for this month and see how I get on.   I am anxious about any negative impact on my lung function but I am also really struggling with the nausea and fatigue, and spending a lot of time feeling quite rubbish.  I was determined to tolerate this for the past 6 months but it does start to really wear you down!  They have only had 2 other patients on the drug and neither of them could tolerate taking it.  I need my energy for Estelle and for just living life, so think this is worth exploring.

I'll be back down in another month, so keeping my fingers crossed that I'm coping better with the side effects at this stage, but without any negative impact on my lung function.  Onwards!