On Monday, I received my Lumizyme infusion at the new site Genzyme arranged in Orlando. This site is technically closer to where I am than the University of Florida, but the drive there is much more unpleasant. Going to UF was super easy as most of the trip I could set the cruise control. The new, closer, site involved traffic and about a million stop lights. The drive to UF is about 2 hours of easy highway driving and it took me an hour and 15 minutes to get to the new site. I’m going to try a different route next time and see if I can make the drive easier and faster, unfortunately this will involve having to take dreaded toll roads – which I despise. I especially dislike the idea of having to pay a toll to simply go across town.
The infusion suite itself is nice, really nice. It is private and has a very comfy chair and a TV with a DVD player. The people who work there are very nice and the best part… the nurse got my IV on the first try! This particular facility does a lot of home health care, so if down the line it becomes possible to receive my Lumizyme infusions at home I will probably be able to continue working with them thus saving me another transition to a new infusion team. Steve, my local Genzyme guy, is looking into when and if that will be allowed with Lumizyme. Currently, patients in other countries are able to have home infusions and Myozyme users in the US have been told that after a year, they can receive home infusions – barring any complications of course. With Lumizyme having only received FDA approval in May of this year, it might not be as “easy” to switch to home infusions after just one year of treatment – time will tell.
So for now, I will continue to travel to the new Orlando site – hopefully the drive will improve. If not, I’m setting the cruise control and heading back to the Home of the Gators!