After a couple weeks of those panic-like auras, I had another grand mal seizure at around 4:30 this morning. Only the second one in my life. Chewed up my tongue pretty good, wet the bed, and have a headache. I feel just exhausted. My husband took good care of me and rolled me over…unfortunately I bit his finger a little. 🙁 I just don’t know what to do. I didn’t expect to be put into this situation. Onward.
Sometimes I wonder if NYU had any idea of how often the safety of their human research subjects was being placed at risk – but how could they not know? The FDA dinged them on multiple violations for the Pfizer drug trial (Protocol #B0541013), however that study wasn’t the only one in which NYU’s regard for subject safety is questionable. An earlier brain imaging study (S12-01521), a collaborative effort between NYU and Yale, had problems as well. As I mentioned in my open letter to NYU, one of the incidents that I believe jeopardized my safety was being put on a
11:45AM – I still had almost three hours until my scan was scheduled to begin. I brought out my phone to play a game of Candy Crush, only to discover that one-handed smart phone operation is kind of a pain in the ass. I put it away. I decide instead to lean my head back, rest, and focus on my breathing because I’m starting to feel that familiar knot in my chest, right behind the base of my sternum. Over the next couple of hours Brenda pops in every so often to flush the arterial line and check in on
Brenda gently yet realistically prepared me for the arterial line placement – it would be uncomfortable, and there would be a good chance that they wouldn’t be able to place it on the first try. They would try up to three times on each arm – with my permission, of course. The insertion area would be numbed with a local anesthetic to minimize pain during insertion; the arterial catheter itself would be about two inches long. Once the line was successfully placed, my arm would be strapped to a splint to keep me from moving it. The anesthetic would wear
Unfortunately for the staff, I ask LOTS of questions. 🙂 Here’s what I found out: I would be receiving an infusion of an experimental radioactive compound – also referred to as a radioactive isotope or “radiotracer” that carries a radioactive tag. The radioactive drug would attach itself to a specific protein in my brain; the PET scanner is used to detect where the radioactivity goes – showing exactly where these receptors are located in my brain. The compound is not approved by the Food and Drug Administration for marketing, but is allowed to be used for research in humans. The
The waiting area was a small alcove off the main hallway, with three hospital style recliners, small side tables that were covered in magazines and a couple of houseplants that were in dire need of watering. On one wall was an elevator – and the other was one giant window to the outside; we were on the second floor, and I could look down on to the busy street below. Like the MRI center, it was quiet and cool – it had a little more activity, a few people walking back and forth, but for the most part it was
I left the hotel in New Haven by 7:15AM the next day; my MRI was scheduled at the Yale research facility for 8AM. Just as I had to do in New York, I checked out of the hotel and carried my belongings along with me to the research facility. I packed light – but not light enough. A single backpack would have been ideal, because I was never able to settle down in any one place for very long before it was time to move along again. As I entered the building it was empty except for the lone security