I’m home. This will be short as I’ve only been home about five minutes, but being without a computer to write with during these past few days has been like torture for me! I’ve got tons of blogging to catch up on!
I know several of the regular readers want to know how the trip to the National Institutes of Health went. I suppose it went well, all things considered.
The good news is my FVC was better than the one taken at KUMed. The bad news is it wasn’t in the normal range either. They seemed to have a hard time getting a read, but the best one I puffed was an 87, and the worst one (after the abuderol ironically enough) was an 82. The other numbers were all down as well.
They did a high resolution CT scan and it showed two new nodules on my lungs as well as “a patchy area” that seemed to be a point of debate. The good news is no one thought it looked like fibrosis, so they thought it might be from allergies. But, my allergies are actually much improved, so I’m not convinced.
Dr. Gahl said that the results would make me eligible for the drug trial, however. Since I was only there for a single day, I’ve got to go back for a complete weeklong work up within 30 days. So, I’m trying not to assume I’ll be in the trial, even though everyone else at NIH seems to be assuming that. It’s just been too long a road with too many ups and downs. Having my PFTs down is emotionally draining enough without having the rug yanked out from under me again.
How am I doing with this news? Well, it depends on when you ask. I’m emotional about it to say the least. On the one hand, I’ve been hovering around a downward turn for four years, so the chances that I was going to walk in and puff a 100 were pretty slim to none. Given my numbers and scans, the chances that I’d get through the next five years without a big drop are also pretty slim to none. So, given that, I’d just assume be on the top end of eligibility for the trial.
At the same time, this is a trial and there is no other treatment or cure. It’s going to get worse, and we seem to be moving down that road. I won’t know if I’m one of the patients on the drug or not. That’s a very scary thought.
I have lots of other thoughts about it too, but am too drained to share right now. That’s the quick and dirty version!
Also, lots to tell from the Genetic Alliance meeting – stay tuned!
I know several of the regular readers want to know how the trip to the National Institutes of Health went. I suppose it went well, all things considered.
The good news is my FVC was better than the one taken at KUMed. The bad news is it wasn’t in the normal range either. They seemed to have a hard time getting a read, but the best one I puffed was an 87, and the worst one (after the abuderol ironically enough) was an 82. The other numbers were all down as well.
They did a high resolution CT scan and it showed two new nodules on my lungs as well as “a patchy area” that seemed to be a point of debate. The good news is no one thought it looked like fibrosis, so they thought it might be from allergies. But, my allergies are actually much improved, so I’m not convinced.
Dr. Gahl said that the results would make me eligible for the drug trial, however. Since I was only there for a single day, I’ve got to go back for a complete weeklong work up within 30 days. So, I’m trying not to assume I’ll be in the trial, even though everyone else at NIH seems to be assuming that. It’s just been too long a road with too many ups and downs. Having my PFTs down is emotionally draining enough without having the rug yanked out from under me again.
How am I doing with this news? Well, it depends on when you ask. I’m emotional about it to say the least. On the one hand, I’ve been hovering around a downward turn for four years, so the chances that I was going to walk in and puff a 100 were pretty slim to none. Given my numbers and scans, the chances that I’d get through the next five years without a big drop are also pretty slim to none. So, given that, I’d just assume be on the top end of eligibility for the trial.
At the same time, this is a trial and there is no other treatment or cure. It’s going to get worse, and we seem to be moving down that road. I won’t know if I’m one of the patients on the drug or not. That’s a very scary thought.
I have lots of other thoughts about it too, but am too drained to share right now. That’s the quick and dirty version!
Also, lots to tell from the Genetic Alliance meeting – stay tuned!
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