Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 I'm Ken Baker age 66 living in New Hampshire, diagnosed with UIP in 12/05 via x-ray and HRCT. Confirmed via VATS biopsy in 10/06. Enrolled in Pirfenidone Capacity Clinical Trial 2/07 - 8/08. Entered Pirfenidone Open Label Clinical Trial 9/08. I had my Pirfenidone open label study 12 week followup appt at Beth Israel Deaconess Medical Center in Boston on Monday. This appt included the PFT and my difussion was improved to the best it has been since diagnosis in Dec '05. I completed the Pirfenidone Capacity study back in Aug '08 and started the openlabel study in Sept '08. I'm on the real medicine in the open label study. I'm told I'll discover if I was on placebo or real med in the capacity study sometime in early 2009. I'm still only on oxygen when I'm on the treadmill. For those who watch their PFT (percentage of expected) numbers my forced vital capacity (FVC) has ranged from a low of 79% to curent high of 92%. My 1 second blow rate (FEV1) has ranged from 84% to current 108%. My diffusion (DsbHb) has ranged from low of 55% to currrent 74%. Ken Baker 66 UIP/IPF 12/05 New Hampshire Quote Link to comment Share on other sites More sharing options...
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