This past week was the two month anniversary of my being in the clinical trial to investigate the use of Pirfenidone to treat the pulmonary fibrosis of the Hermansky-Pudlak Syndrome type of albinism.
Yeah!
I’m doing great. I’ve had a rough month with a bit of stomach flu and ongoing sinus troubles – but I don’t think either of those is related to the study. They’re more like annoyances.
My stomach has been a bit more sensitive, it seems, since starting the drug trial. The first four weeks I had pretty much non-stop diarrhea. As soon as it would start to improve, it was time to up the dose and the runs would return. Now, that is much improved, but I find my stomach is very sensitive to eating any veggies or fruits. Eating an apple or a salad pretty much brings back the runs. So, I’m having a little trouble eating a completely balanced diet – but it isn’t too bad. It seems like I’m eating a lot of meat and dairy. Actually, I ate a salad yesterday and it wasn’t too terrible. I don’t get cramps, so it isn’t painful.
The other news of note is that I haven’t needed to use my abuderol even once since the trial started. I’m not sure, if I’m getting the drug, how quickly I could expect to notice any differences. I’m also not sure if it would impact my need for abuderol as the drug is only supposed to slow the development of the pulmonary fibrosis. Also, frankly, this is the time of year when my breathing is best. I’m not allergic to the fall like I am the spring.
These developments are interesting to note – but I’m making no assumptions about whether I’m on the drug or the placebo. Everyone keeps telling me that surely I am indeed on the drug, and to be honest, if I were a betting person, I’d put my money on yes as opposed to no – but still, there’s something in my psyche that just won’t quite allow me to assume that indeed, I’m getting the real stuff.
Perhaps I’m worried about being disappointed or looking silly if indeed I’ve been getting a sugar pill the whole time. Maybe the idea of knowing (even though at this point I can’t find out) would take away the sense of uncertainty I’ve gained back about my future. I sort of like the idea that just maybe I’m doing something that could help – and I’m not sure that even if the trial were over, and I could find out, if I’d really want to know.
Being the “just the facts” kind of person that I am, one of the lessons I’m learning is that in some things, it’s sort of nice to have an element of the unknown.
Yeah!
I’m doing great. I’ve had a rough month with a bit of stomach flu and ongoing sinus troubles – but I don’t think either of those is related to the study. They’re more like annoyances.
My stomach has been a bit more sensitive, it seems, since starting the drug trial. The first four weeks I had pretty much non-stop diarrhea. As soon as it would start to improve, it was time to up the dose and the runs would return. Now, that is much improved, but I find my stomach is very sensitive to eating any veggies or fruits. Eating an apple or a salad pretty much brings back the runs. So, I’m having a little trouble eating a completely balanced diet – but it isn’t too bad. It seems like I’m eating a lot of meat and dairy. Actually, I ate a salad yesterday and it wasn’t too terrible. I don’t get cramps, so it isn’t painful.
The other news of note is that I haven’t needed to use my abuderol even once since the trial started. I’m not sure, if I’m getting the drug, how quickly I could expect to notice any differences. I’m also not sure if it would impact my need for abuderol as the drug is only supposed to slow the development of the pulmonary fibrosis. Also, frankly, this is the time of year when my breathing is best. I’m not allergic to the fall like I am the spring.
These developments are interesting to note – but I’m making no assumptions about whether I’m on the drug or the placebo. Everyone keeps telling me that surely I am indeed on the drug, and to be honest, if I were a betting person, I’d put my money on yes as opposed to no – but still, there’s something in my psyche that just won’t quite allow me to assume that indeed, I’m getting the real stuff.
Perhaps I’m worried about being disappointed or looking silly if indeed I’ve been getting a sugar pill the whole time. Maybe the idea of knowing (even though at this point I can’t find out) would take away the sense of uncertainty I’ve gained back about my future. I sort of like the idea that just maybe I’m doing something that could help – and I’m not sure that even if the trial were over, and I could find out, if I’d really want to know.
Being the “just the facts” kind of person that I am, one of the lessons I’m learning is that in some things, it’s sort of nice to have an element of the unknown.
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