Lucky Number 7

March 14 marked my 7th infusion of Myozyme. Wow, how time flies. I can’t believe it’s already the seventh and the third month I’ve been on the Expanded Access Program.

Unlike the 6th infusion which was event filled and action packed, the 7th is a starck contrast.

I checked in on the evening of the 13th. I was surprised that the whole process was quick this time. In less than 30 mins I was already in room 739 of the PGH.

The only incident I’d conisder during the whole stay was when I woke up suddenly on the morning of the 14th. I felt or in hindsight probably imagined my bed shaking. I thought that an earthquake had just occurred. I immediately woke up my aide, to his surprise. I asked if he felt the earthquake. He replied in the negative.

Since we were already awake we started getting ready for the infusion. We ordered our breakfast. As usual, breakfast came from McDonalds.

I did my morning rituals, stretching, breakfast, brushing my teeth, putting on my luck charms (cross necklace, fight pompe t-shirt and my livestrong bracelet). By 9 a.m. I was all set.

As it was my 3rd month on the program some tests needed to be done to monitor the progress. I had those done the saturday before the 7th infusion. I have an interesting story about that but I’ll reserve that for another entry.

Needless to say that the tests when compared to the baseline tests I had done prior to starting was good. The indications of the test point to some improvements. I’m keeping my fingers crossed.

True to form as being an uneventful infusion, even the sticking of the I.V. needle and blood extraction went well. It was a one shot deal. All it took was one try and the needle was in and the I.V. was ready.

We started close to 11 a.m and finished at around 3 p.m. That’s good time. We were able to go through the whole process without hitch which meant that we were able to go to the maximum infusion rate.

After 3 months on the program, I must say as a whole I am feeling much better. I know I’m better off now than I was last december. I feel my energy is getting higher. I started in really bad shape and now I’m slowly working my way to a better state.

Fight Pompe!

3 Replies to “Lucky Number 7”

  1. Juan,
    Love your website. I was wondering what all you can do prior to the start of the EAP. I am getting ready to start and wanted to compare our abilities. You are amazing and if you need any help let me know. I started a foundation 7 years ago here in the US and we would love to help you if you need some money. write when you can. trae

  2. Dear Juan
    I want to say hello ! This is the first time I see your pages. Wonderful ! I’m fighting Pompe like you do. With music for example :

    I wish You all the best and I’m going to read your pages better soon when I have more time….


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