I received my 8th ERT infusion this week, my second official Lumizyme infusion. No cameras or reporters this time – how boring! Everything went fairly well. The new pharmacy delivered my meds half an hour before my appointment time. Now that Lumizyme is commercially available there is a new delivery system for my meds which involves a wholesaler and a distributor. Instead of Genzyme delivering the vials to the hospital pharmacy for preparation, they are now delivered to an off-site location where my Lumizyme cocktail is mixed.
The nurses got my IV started with just two sticks and I have no bruises to show for it. I started running a slight fever during my infusion – about 3 degrees above my normal temp. They monitored me for an additional half and hour or so because of this. I honestly didn’t even notice I had a fever and felt fine. All my other vitals were normal and consistent, so after checking with Dr. Byrne I was given the OK to leave with instructions that should I start feeling worse to head to the nearest ER. It never came to that, and I am fine.
After I left the hospital I met up with the Crowley family from Pennsylvania. This was my first time meeting them and they are a very important component in my Pompe journey. Two of their daughters have Pompe also and I contacted them via the internet once I received my diagnosis. Matt, the girls’ father, pointed me in the direction of Genzyme and Dr. Barry Byrne while encouraging me to be my own advocate! I know that without the information the Crowley’s had for me I probably wouldn’t have started my infusions as soon as I did. So I am forever grateful to then for sharing their story and knowledge with me.
The entire family, Matt, Donna, Emma, Carter, and Maddie were visiting Gainesville to meet with Dr. Byrne. It was great timing that their appointments were the same week as my infusion – which only happened because my schedule changed due to the “special first” infusion two weeks ago. But honestly, I would have driven back to Gainesville to meet up with them anyway.
Dinner was great – we talked for hours and it was like we had know each other for years. We have so much in common, beyond Pompe. Emma, Maddie, and I took turns quizzing each other about our symptoms. Can you do this? Or do you have trouble doing this? I bet we looked and sounded a little strange to passersby’s. I can imagine the staff and other guests trying to guess what sort of strange game we were playing! We have some symptoms in common and others we don’t. Pompe is a strange disease that hits each person differently. It was great to be able to sit face to face with another family who has been there and done that with the doctors, diagnosis, treatment, and worst of all, the not knowing. They are a wonderful family and very supportive of one another and the Pompe community as a whole.
I hope they are able to visit again. I think I just about have them sold on the idea of a Disney family vacation.