4 September 2010
Today, I finished the draft of the speech which I started yesterday, for the 20th Anniversary Dinner on the Arbitration Club, on 23rd September. This was a rather poignant undertaking as this dinner will be my swan song, almost certainly from formal occasions, of The Arbitration Club, of which, for the next two years or so, I remain, The Founding President.
Yesterday, I updated my profile on me Patients like Me webpage. It was alarming to see that my Forced Vital Capacity (FVC) a year ago was 93% and is now 64% having dropped 10% in the last couple of months. When it gets below 50% it is considered to be’ severe’. My overall condition is measured by the FRS which covers a whole raft of information, but is described generally as -Progressive rate percentile which is now at. 32. Two months ago and it was 34 and is considered to be severe when it drops below 25. In summary, the doctor at Papworth Hospital acknowledged that ‘overrule the trend has been one of a gradual decline’. The next visit to Papworth on the 8 November will be an interesting one in the meantime Carpe Diem...what else can I do?!
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