The test results are in. I haven't been able to blog about them until now because the network at NIH has been up and down this evening. The good news is I did read my pulmonary function tests correctly. My FVC (forced vital capacity) was 91! This is up from 81 four months ago when I started the Pirfenidone trial.
Dr. Gahl gave me a rather lengthy explanation about how I shouldn't get too worked up. This isn't really a huge change because none of the other numbers changed much etc. Yep, I know that. At the same time, I'm grateful, giving thanks to God, and hey, I don't have to go into Christmas with bad news. I can CELEBRATE! Dr. Gahl cracks me up. What doc, I look too happy to you? Just let me enjoy this little moment. Grin! My DLCO did fall a bit, from 63 to 60, but that's still within the margin of error. My oxygen saturation also did fall on the six-minute walk test to 94, which isn't good but is about the same as four months ago. I was, however, able to walk 47 meters further than last time.
The funny spot on my lung, however, is pulmonary fibrosis. I'm not too upset about that as that's what we thought four months ago. The good news is this horrible, horrible cold I've had for five weeks doesn't appear to have done any further damage. The CT scan isn't really changed from last time. It's just a matter of the realization that this isn't maybe just an infection - it's pulmonary fibrosis and that isn't ever going to go away.
There was one other person here at NIH that was also admitted to the drug trial this week. That was exciting too. It's just one more step closer to the next step to the cure! It's one more step closer to making sure that this drug becomes available to everyone that needs it.
Dr. Gahl gave me a rather lengthy explanation about how I shouldn't get too worked up. This isn't really a huge change because none of the other numbers changed much etc. Yep, I know that. At the same time, I'm grateful, giving thanks to God, and hey, I don't have to go into Christmas with bad news. I can CELEBRATE! Dr. Gahl cracks me up. What doc, I look too happy to you? Just let me enjoy this little moment. Grin! My DLCO did fall a bit, from 63 to 60, but that's still within the margin of error. My oxygen saturation also did fall on the six-minute walk test to 94, which isn't good but is about the same as four months ago. I was, however, able to walk 47 meters further than last time.
The funny spot on my lung, however, is pulmonary fibrosis. I'm not too upset about that as that's what we thought four months ago. The good news is this horrible, horrible cold I've had for five weeks doesn't appear to have done any further damage. The CT scan isn't really changed from last time. It's just a matter of the realization that this isn't maybe just an infection - it's pulmonary fibrosis and that isn't ever going to go away.
There was one other person here at NIH that was also admitted to the drug trial this week. That was exciting too. It's just one more step closer to the next step to the cure! It's one more step closer to making sure that this drug becomes available to everyone that needs it.
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