My Tysabri Diary...

What should have been my third infusion of Tysabri turned into another Kaiser nightmare instead...,

After a 1 and 1/2 hr drive one way to my 3rd infusion... I arrived, checked in, wrist i.d. and everything, I was taken into a private infusion room with a door that closes...hmmm I said to my caregiver Ray..."What's up with this? Why not like before my other two infusions..one of the regular infusion chairs where 4 patients are all receiving different infusions together?" He said, "Maybe they want to keep a close eye on you since this infusion is the 12 week mark?" Okay, that sounded plausible.....until....15 mins later 4 infusion personnel walked in my room and closed the door......hmmm, now I reeeally had an uneasy feeling...., One of the infusion nurses said, "Lauren, we have some bad news, we can't do your 3rd Tysabri infusion today....". Now I understood the reason for the room with a door that closed because they had anticipated my reaction.....I said, "WHAT?????? YOU'VE GOT TO BE KIDDING!!!! DO YOU ALL REALIZE MY CAREGIVER JUST SPENT AN HOUR AND A HALF IN RUSH HOUR TRAFFIC TO GET ME HERE???? WHY THE &^*& CAN'T I HAVE MY INFUSION?????? AND THIS BETTER BE DAMN GOOD!"

The nurse then turned the "Kaiser" explanation over to the Infusion Administrator to continue...."Ms. Roberts, your med has not arrived, as the girl (receptionist) who set your appt. is new and did not know she needed to advised us in advance that it was a "specialized infusion" so your Tysabri won't be here until Wednesday, the 20th, so you have to come back then."

WTF? I said, "LOOK GDI, I AM SICK OF KAISER'S DELAYS, THE MORE DELAYS I RECEIVE, THE FURTHER BACK MY INFUSIONS ARE PUSHED - I'VE ALREADY LOST ONE WEEK AND AT THIS POINT, I'VE BEEN SHORTED MY 13 INFUSIONS PER YEAR, I DOUBT I'LL RECEIVE 12, AND I'M LUCKY IF I RECEIVE 11 - HOW DARE THE PATIENT (ME!) BE MADE TO PAY FOR YOUR ADMINISTRATIVE INCOMPETENCE!" (I'm thinking Biogen must be happier than a pig in sh*t right about now, ESPECIALLY after they tried screwing me by blantantly sent false inquiries to my neuro from my Blog recently...how many others are being screwed out of their drug of choice [Tysabri]???)

I was then advised that 'measures' are now in place to ensure this doesn't happen again, and to call ahead next time to make sure the med is here. WRONG RESPONSE....I THEN YELLED AT THE TOP OF MY LUNGS, "OOOOOH NO!!! NO NO NO NO NO NO!!!! I REFUSE TO DO KAISER'S JOB FOR THEM, IT IS YOUR RESPONSIBILITY TO MAKE GD SURE THE MED IS HERE PRIOR TO THE PATIENT'S INFUSION, AND IF YOUR STAFF IS INCOMPETENT, PERHAPS THIS INFUSION CENTER SHOULD BE SHUT DOWN, AND FURTHERMORE, SINCE BIOGEN IS BEING SO F*&^%$# STRICT ABOUT THE TOUCH PROGRAM, THAT THEY SHOULD HAVE KNOWN I WAS DUE FOR MY INFUSION AND THEY SHOULD HAVE ALERTED THE DISTRIBUTOR TO MAKE SURE THE MED WAS HERE, CAPICE?!?!?!"

Then she proceeded to "tell" me all "about Tysabri"...I was so exhausted by then, I just threw up my hand in her face and said, "SAVE IT! Barbara, I'll see you Wednesday, come on Ray - let's go, I feel a relapse coming on thanks to ALL THE STRESS I've just been through". I cried all the way home, I'm still crying. I don't feel like doing anymore posting right now, (((hugs)))

Love, Lauren :(
A very proud member of www.MSpatientsforchoice.org