As the saying goes, the third time is the charm. I've started blogging twice since arriving at NIH, but to be honest, I was just too tired to finish. Last night I started getting phone calls from some of you worried that perhaps I'd had some bad news.
I'm happy to report that so far, all the test results are good news! I've just had a trouble time sleeping here, and thus went three days with about an hour of sleep a night. When I'm too tired to blog, you know I'm dog tired!
Okay, so, let's get to the point. How are the lungs?
Yesterday I had an abbreviated wrap up session with Kevin for the cameras. Thus, I still don't have all my test results. But, I do know that the preliminary pulmonary function test report was back. I couldn't be happier.
When I entered the trial my forced vital capacity (FVC) was 82 percent of predicted. It went above 90 on the four-month and the eight-month follow ups. And yesterday, it was 94 percent of predicted, well into the normal range, and 12 percent better than a year ago. They always tell us that it isn't one test report that matters, it's the trend. Well, this is a trend I can live with - literally.
We also looked at my CT scans with the camera crew. There was fibrosis on the scans, but it's minimal, and it's stable. Yes, there was a tad more than a year ago, but so minor the docs didn't think it was significant. They're saying the fibrosis is stable.
So, I'm thrilled.
Nicole, the film producer, asked me how I felt about these results. I told her I was elated - but I worry that I didn't convey just how elated I was. I was so tired, I felt like a bit of a robot. Elated doesn't even begin to discribe it.
In the interest of full disclosure, I do want to note that just because my reults are good doesn't mean that I am on the drug. It is possible that I'm on placebo and somehow have made these gains on my own. The entrance criteria of below 85 percent of predicted was selected because it's a point at which gains typically aren't huge and don't last. So, it might not be likely, but it isn't impossible and I do want to point that out.
For me personally though, as long as I'm doing well, I guess it really doesn't matter.
More later on the other test results.
I'm happy to report that so far, all the test results are good news! I've just had a trouble time sleeping here, and thus went three days with about an hour of sleep a night. When I'm too tired to blog, you know I'm dog tired!
Okay, so, let's get to the point. How are the lungs?
Yesterday I had an abbreviated wrap up session with Kevin for the cameras. Thus, I still don't have all my test results. But, I do know that the preliminary pulmonary function test report was back. I couldn't be happier.
When I entered the trial my forced vital capacity (FVC) was 82 percent of predicted. It went above 90 on the four-month and the eight-month follow ups. And yesterday, it was 94 percent of predicted, well into the normal range, and 12 percent better than a year ago. They always tell us that it isn't one test report that matters, it's the trend. Well, this is a trend I can live with - literally.
We also looked at my CT scans with the camera crew. There was fibrosis on the scans, but it's minimal, and it's stable. Yes, there was a tad more than a year ago, but so minor the docs didn't think it was significant. They're saying the fibrosis is stable.
So, I'm thrilled.
Nicole, the film producer, asked me how I felt about these results. I told her I was elated - but I worry that I didn't convey just how elated I was. I was so tired, I felt like a bit of a robot. Elated doesn't even begin to discribe it.
In the interest of full disclosure, I do want to note that just because my reults are good doesn't mean that I am on the drug. It is possible that I'm on placebo and somehow have made these gains on my own. The entrance criteria of below 85 percent of predicted was selected because it's a point at which gains typically aren't huge and don't last. So, it might not be likely, but it isn't impossible and I do want to point that out.
For me personally though, as long as I'm doing well, I guess it really doesn't matter.
More later on the other test results.
Comments