It’s now official. I’ve got pills! I have no idea what kind of pills they are – but I’ve got them! Yesterday was sort of an emotionally intense day as I waited for the last test results to come back. I was so afraid they’d find some small thing that for some reason would exempt me from the trial.
And when Dr. Gahl and Kevin came to do the final consent and Kevin went away to do the final thing – the point of no return – calling the pharmacy and ordering my pills, it was like waiting for a new chapter of my life to start. I waited and waited – it took most of the afternoon before I could finally go down to the pharmacy and pick up the pills.
As I sat waiting in the pharmacy, I started talking to the other patients in the waiting room. We had all just been approved for various trials of some kind. We were all just beaming from ear to ear as we’d all been given a new chance at life.
Finally my number was called and I was handed a small white sack containing a non-descript white bottle. It doesn’t have any of the markings a normal bottle from your local pharmacy would have. It’s plain, and the label has my name on it, Kevin’s name as the prescriber, his phone number, and a line that says, “Take one capsule (237ml Pirfenidone or placebo) three times daily.” The bottle is only a week’s dose as the amount changes next week.
It seemed like someone should have been there to share the moment with me. I felt kind of silly having this major life moment standing at the elevator.
There has been a lot of water under the bridge for these pills. I’ve given up a future with the man I loved for this chance. There have been years of negotiation and pleading with the drug company, exchanges with NIH’s attorneys and the drug company’s attorneys – so much that I can’t even begin to tell the whole story. I thought of the time that Donna was recovering from being so very ill herself and on a vent, and she had to have a very important conference call with NIH and the drug company – she could barely talk but she pulled it off.
I thought of all the people in the first trial who have made trips to NIH every few months for years upon years to get us to this point, and all the friends I’ve lost for whom the trial didn’t start soon enough. Just looking at these pills makes me choke up inside because so much has gone into making it possible for me to have them, even if I am on a placebo.
A note to people on the listservs with me – I’m not posting much because every time I’m half way through writing a post, Ryan’s computer seems to kick me off. I should be home this evening and back to my own computer, but then again, we’re having bad weather here and I’m wondering if my flight will be cancelled.
More later!
And when Dr. Gahl and Kevin came to do the final consent and Kevin went away to do the final thing – the point of no return – calling the pharmacy and ordering my pills, it was like waiting for a new chapter of my life to start. I waited and waited – it took most of the afternoon before I could finally go down to the pharmacy and pick up the pills.
As I sat waiting in the pharmacy, I started talking to the other patients in the waiting room. We had all just been approved for various trials of some kind. We were all just beaming from ear to ear as we’d all been given a new chance at life.
Finally my number was called and I was handed a small white sack containing a non-descript white bottle. It doesn’t have any of the markings a normal bottle from your local pharmacy would have. It’s plain, and the label has my name on it, Kevin’s name as the prescriber, his phone number, and a line that says, “Take one capsule (237ml Pirfenidone or placebo) three times daily.” The bottle is only a week’s dose as the amount changes next week.
It seemed like someone should have been there to share the moment with me. I felt kind of silly having this major life moment standing at the elevator.
There has been a lot of water under the bridge for these pills. I’ve given up a future with the man I loved for this chance. There have been years of negotiation and pleading with the drug company, exchanges with NIH’s attorneys and the drug company’s attorneys – so much that I can’t even begin to tell the whole story. I thought of the time that Donna was recovering from being so very ill herself and on a vent, and she had to have a very important conference call with NIH and the drug company – she could barely talk but she pulled it off.
I thought of all the people in the first trial who have made trips to NIH every few months for years upon years to get us to this point, and all the friends I’ve lost for whom the trial didn’t start soon enough. Just looking at these pills makes me choke up inside because so much has gone into making it possible for me to have them, even if I am on a placebo.
A note to people on the listservs with me – I’m not posting much because every time I’m half way through writing a post, Ryan’s computer seems to kick me off. I should be home this evening and back to my own computer, but then again, we’re having bad weather here and I’m wondering if my flight will be cancelled.
More later!
Comments