Date: Sat, 21 Sep 2013 10:20:09 -0400
From: annie lanzillotto <lanzillotto@GMAIL.COM>
Subject: coraggio
Hi All,
Just a note of “coraggio” and fortitude.
When I was being discharged from Sloan-Kettering this week after a lung
infection, I said to the young attending, “In order to be discharged here
is my list of demands” and I handed her a beautifully magic markered paper
— including my demand for a one month supply of Xopenex (nebulizer med
that is about $2000/month and only covered if you’re in a nursing home —
it’s considered by ins companies as “life support”) — Now, I don’t
understand the economics of pharmaceutical companies and insurance
companies and how this gets communicated down to pharmacists and doctors
and patients — but nevertheless, I knew I was wheezing bad and green
lung gunk — and that Xopenex keeps me breathing hence alive.
Twenty hours later, I got the medicine bag. After visits and “no’s” from
everyone. I called in the Rabbi, the Pharmacist, the Social Worker, The
Patient Advocate, numerous doctors, etc. I simply refused to leave. The
language I used was all from my days as an AIDS ACT-UP Activist. “I will
handcuff myself to the bed until I get my meds.” “Remember the Alamo.” I
was calm. Sitting Bull. Just kept ordering breakfast lunch and dinner. I
pulled out my I.V., bandaged my arm, read, wrote poetry, painted, and
continued to get my nebulizer treatment. The bottom line is this. In 3
minutes of an acute asthma attack I could be dead. I refused that. At all
costs. The attending was stunned when the pharmacy came through with the
bag of meds. The attending at one point said to me “As a compromise, maybe
we can get you one box of the meds.” What compromise? Is death a
compromise? Is this a business negotiation? Have I survived 32 years at
Sloan, to die because the breathing med is expensive? How does this all
work? How can I benefit others with this story? I have always been an
advocate / activist for people to get med care. I studied Medical
Anthropology at Brown. I went to Egypt to study how peasants with
Schistosomiasis get treated or not and why. And how this turns to bladder
cancer. I was an AIDS activist in the 80’s. And now it all comes down to
3 minutes and my own irradiated scarred fibrotic reactive lungs and
brochial tubes. my alveoli
Love and Power
Annie
HD 86
Thy 97
damages galore