SPINRAZA THIS WEEK

This was one of those busy weeks. In preparation for taking Spinraza, I had to rearrange my medications. No blood thinner when I’m getting punctured in the spine. Even though I have been through this several times, I always feel a small amount of stress. Things CAN go wrong even in the best of settings. For the most part, though, I was fairly confident that things would get done quickly. Granted, I don’t really enjoy being NPO for after midnight, but it really isn’t a huge problem. I Have certainly faced worse.

The trip down was uneventful. Traffic seemed fairly light. I can’t tell if it was really due to coronavirus or whether it was just a good traffic day. Downtown seemed kind of sad, although I guess it was more the medical center itself then downtown. We some more of that on the way home. It just seemed like fewer people were around, of course they all were masked. They also seemed a little bit sadder, if you could tell by their posture while walking around the campuses of all those hospitals.

We probably got there about 15 minutes before I thought we would. I always budget extra time for finding the parking lot, it’s usually horrible. I may not have needed to, but I don’t know. The parking lot was not empty, but it was not difficult to find a parking place. There were fewer people around waiting to use the elevators that led to the place where you could walk across the sky walk. We answered some questions about whether we thought we had Covid, they took our temperatures, and sent us on our way.

We made it to the waiting room in record time, this time we didn’t turn the wrong way. There were about one third as many chairs available for patients as usual and everyone was being correctly distant. And then we waited and waited some more. We got back to the pre-procedure area and I got my hospital gown on. Then we waited for a bedpan so they could sample the urine to make sure the Spinraza wasn’t affecting my kidneys. Then we waited for them to access my port so they can do blood work. Then we waited for all the lab work to come back.

The nurses and the doctor came to discuss with me about the procedure – making sure I knew what I was getting into. I pretty much described to them what they were going to do and how long it was going to take. Then we waited, I’m not sure what we were waiting for this time but it was part of the procedure.

I went to the CAT scan room and they positioned me. They tried to comfort me but I really didn’t think that was necessary, I have mastered lying still. The doctor came in, I was mildly sedated (very mildly, by my own request), and they figured out how the needle was going to work around all my spinal instrumentation. (I have to admit, I think CAT scans are a nifty tool, and I like seeing the pictures afterwords.) When they inserted the needle, I was a little uncomfortable in my thigh this time. It is SO weird what happens when they brush against a nerve! Anyhow, the procedure itself took about three minutes, but I was back in that room for about 15 or so minutes?

I got back to the room and got dressed. Oh yeah, they introduced me to the PureWick device. I couldn’t use it then, I’ve been without any liquid since midnight the night before. I drank an instant breakfast so I at least have SOME nutrition in my system. Then I had to wait for them to de-access my port and get papers to go home.

This is the longest amount of time it ever took to do a Spinraza’s dosing. We got into the parking garage at maybe 11:10 AM. We did not leave the parking garage until 4:50 PM. Then we got to face Houston Medical Center and downtown area traffic. Such FUN! After nearly running down some suicidal bicyclists who almost deliberately ran in front of the car, we got to the HOV lanes. It was not incredibly bad, except that just as we came to it, FM 1488 had an accident that really messed up traffic. We found another way home and I ate pizza for dinner.