Jackie, my nurse, called this morning to let me know that I have officially been “drummed out” of the clinical drug trial and didn’t have to come into the office today for my Cinryze infusion. Yeah! So I needled up and did my first official Cinryze infusion myself at home. Double yeah! And promptly fell back to sleep — how glorious not to have to get my sorry ass into a car while having an attack (moderate though it was) and drive 20 minutes to my doctor’s office to get it “fixed!”
I am officially the first person in the US to kick-off the use of Cinryze outside of the clinical trials AND I’m doing it at home WITHOUT supervision or oversight. I am finally in charge of my health once again. What a blessing and what a coup for the Hereditary Angio Edema (HAE) Association — it is thanks to their perseverance and dedication that this has happened — and I was no slouch either! This has literally been a fight for my life. Now I just have to scratch up $7,600 and life will be golden. I hoped to hear from PSI before they shut down for the holiday season, but ce la vie! Life is still GREAT!