I went to the hospital last December 18 in preparation for what was to be my 25th infusion. It was scheduled for the next day.
Things were pretty much the same as the usual nights before an infusion. Except that the Christmas spirit was in the air. Sure times are a bit tough now but that doesn’t stop people from celebrating Christmas. The hospital had pockets of Christmas decors set-up by individual groups per section of the hospital. Some were having their Christmas party, some were preparing for their own party while there were people who have already finished their celebrating.
The night went pretty much quietly. My aides and I ate our dinner, watched T.V. and basically just passed away time till we all fell asleep.
Infusion day went the same as it pretty much does. It’s just less strict now when it comes to procedure since the infusions now aren’t under the Expanded Access Program (EAP) anymore. Instead this is our second infusion under the International Charity Access Program (ICAP). That being said, it doesn’t mean that the doctors and nurses are being lax about the infusions. They’re are still taking the necessary precautions to make sure that I have an uneventful and safe infusion.
My 25th infusion effectively marks my one year on Myozyme. December 19 is one day shy from the day I got my first infusion which happened December 20, 2005.
Having been on Myozyme for a year now I am extremely happy and grateful for the year that has passed. I’m happy that I was able to survive this year intact. Nothing untoward happened to me during my infusions. Except for “one eventful infusion”:http://www.fightpompe.com/article/38/6th-times-a-charm, the rest pretty much went well.
I’m grateful for the year that was. I’m grateful for having the chance to receive Myozyme and continuing to do so. I’m grateful for the team of doctors that have cared for me this year. They have done a wonderful job in making this experience a good one.
I’ve been hearing some bad stories of other patients and their experiences with infusions. Some of them have been unable or had a hard time getting Myozyme. Some have had troubles during their infusions with some patients suffering from a mis-inserted I.V. line thus the enzyme not being able to get to the blood where it’s supposed to go. I’m grateful and extremely happy that I’ve had very little bad experiences with infusions.
I thank the lord for giving me this year. A fellow patient asked me if what benefits or what improvements I’ve felt over this past year with Myozyme. I honestly will say that there is a little improvement. Not much by other people’s standards. I’ve managed to get back to going out again although still not as much as I’d want but certainly better than a year ago. Energy has improved however strength has not.
However the biggest thing for me is that while this is liitle improvement, at least there’s no continued progress of the disease. Without the Myozyme I’m not sure what state of health I’d be in right now. So I’m grateful I’ll be living another year to Fight Pompe.
Time flies by so quickly. It’s been a year. Here’s to another year with hopefully more improvements to come.