August 29th marked my 18th infusion. I can’t believe that it’s been 18 sessions already. It seems like only yesterday when I started my infusions. How time flies.
By this time, we’ve got the infusions down to a routine already. There hasn’t been much hiccups of late. It’s been smooth sailing for most of the sessions that we had.
I guess now our only major problem is getting a line in for the infusion. I’m a moderately difficult patient to get a line in. It usually takes several tries for them to get it. Add to that that it’s been 18 infusions so some of my veins are already bruised and can’t be used for the time being.
My left arm is usually easier to get a line in. So for the past few infusions it’s always been on the left arm. This time though we got to use the right arm. It took several tried but we got it in.
The session went well except for a slight elevation of my heart rate during the beginning. This couldn’t have been due to the enzyme coz we still haven’t gotten the enzyme in when my heart rate went up. A few minutes after it stabilized and all went well.
The highlight of this session was the visit of Dra. Padilla. She’s one of the lead doctors for the IHG (Institute of Human Genetics). We discussed our presentation for the LSD conference in Japan this September. I’ll be doing a phone patch together with my mom to talk to the doctors during the conference. We threw around some ideas about what effective message to give.
We also discussed my transition from the EAP (Expanded Access Program) to the ICAP (International Charity Access Program). With the FDA approval of Myozyme, Genzyme is transitioning all of its clinical trials and other programs to commercial ones. Either through HMO, Insurance companies, private funding or programs such as the ICAP.
I must admit I was worried when I found out the news. As much as I’ve prepared myself for the eventuality that I might need to stop getting Myozyme because the EAP has finished, it doesn’t actually hit you until it’s there.
However I was reassured by my doctors that they don’t see any problems with the transition to ICAP. Let’s hope so.