The New Season of
Pinky Penmark Blogs
is Here.
Overcoming fear, tragedy, and depression and getting your life back.
Other than being in Tallahassee Regional Medical Center for the 27th time suffering from pancreatitis with a Demerol PCA pump allowing me to stay in a pain-free haze while coming in and out of consciousness, September 11, 2001, began as a typical day.
What of which I had no idea was that this day
would forever change my country, the world, and my life.
I was propped up in my hospital bed that
morning eating my clear liquid diet and feeling quite sorry for myself as I had
been doing for the past two years. During this period, I spent more time in the
hospital than I spent at home. From my hospital bed, I watched Y2K fears spread
across the world and Florida become the country’s embarrassment during the
hanging chad debacle of the Bush vs. Gore election in 2000.
I became depressed because my doctors and
family were quite sure that I was an out-of-control alcoholic as the most
typical cause of pancreatitis is heavy drinking. I continued to tell my doctors and nurses that
it was a stretch for me to have more than two cocktails a month during this
period of my life, and they continued to treat me with increasing disrespect
because they believed that I brought my medical condition upon myself through
alcohol abuse. I had been living with HIV since 1988 so I probably, in fact,
had reason to abuse alcohol, but I knew positively that alcohol was not the
cause of my chronic pancreatitis although no one else believed that at the
time.
A few weeks before September 11, 2001, my doctors
sent me to Shand’s Hospital at the University of Florida in Gainesville to be
evaluated for the Whipple procedure which is a life-changing pancreatic surgery
that would have rendered me insulin-dependent for
the rest of my life.
Whipple
procedure.
Source: Moffitt Cancer Center
The Whipple procedure (pancreaticoduodenectomy)
is an operation to remove the head of the pancreas,
the first part of the small intestine (duodenum), the gallbladder and the bile
duct. The remaining organs are reattached to allow you to digest food normally
after surgery.
Source: Mayo Clinic
Within three to fourteen days after being
released from the hospital, the distinctive abdominal pain that I had learned
to recognize so well would return, and I would have to be re-admitted to the
solitude of yet another hospital room. And,
then there I would lay in a Demerol fogged haze once again dealing with judgmental
looks from doctors and nurses as I floated in and out of consciousness.
It was a life living with HIV and constantly
worried that the other shoe would drop coupled with bout after bout of pancreatitis
that was sucking my desire to live out of me with each new hospital admission.
There were the Infusaports that would have to be surgically placed on each side
of my heart in order to allow the necessary intravenous medications and
nutrition to enter my body and the rush to surgery each time one would become
infected and threaten me with sepsis. There were long periods of time that
I was not allowed to eat anything or take my life-saving HIV medications
because stopping anything and everything from going through my pancreas was the only way to stop my pancreas from overproducing enzymes that would “eat” the organ from the inside out.
What is an Infusaport?
Insertion of Long Term Intravenous Access Device/ Infusaport.
... Once in place, an Infusaport helps to deliver intravenous
administration of chemotherapy or other medications, IV nutrition, blood
products, as well as taking blood samples for testing. It is made of two
components - the port and the catheter.
Source:
And then the very somber and confused face of
Katie Couric broke into my television programming announcing that the first plane
had struck one of the World Tower buildings in New York City. Not long after
the word came of the second tower, the Pentagon, the field in Pennsylvania and
video of people jumping to their deaths from atop the Towers before each one
collapsed in slow motion live on the television in front of me. I began
frantically pumping my Demerol PCA pump to force myself back into that
delicious unconscious world of pain killers as I noticed my room-filling up
with doctors and nurses staring in shock at my television with their mouths
aghast.
My eyes glossed over and the lights went black
as the nightmares began before the dreams of getting my life back emerged. I had miraculously lived through the first
decade of the AIDS crisis after burying so many of my friends. A former partner
had been murdered and died in an ambulance on his way to Ohio State University
Hospital after being stabbed 56 times. Y2K panic and the hanging chad incident were
behind us and now several thousand people were killed on 9/11. The world was
coming to an end in my nightmares, but when I woke up somehow, I had survived.
This is when I decided to do some research and
discovered that in April of 2000, a warning had been issued that the HIV medication
Zerit was causing a high number of patients across the United States to develop
chronic pancreatitis and many had died as a result. It seemed unfathomable to
me that my internist, my infectious disease doctor and my gastroenterologist
that was painting me into a corner of alcoholism were unaware of this massive
warning regarding Zerit that had been sent out to medical professionals across
the country.
As one reads this, I am sure as a layperson
that you have already done the math and realize that I had been taking Zerit for
the past two years. As it turns out,
each time I was released from the hospital and put back on my medications it was no coincidence that my pancreatitis would suddenly recur.
Of course, from this day forward I never took
another dose of Zerit and my pancreatitis never returned. My doctors never
acknowledged their mistake nor did they apologize for falsely accusing me of
alcoholism to cause my pancreatitis.
Soon after I left the city of Tallahassee and
began a new life in Saint Petersburg. Not until doing research for this blog
did I know that in 2014 my internist in Tallassee died at the age of 69 of complications from back surgery and
my infectious disease doctor, whom was my exact age and also from the Columbus,
Ohio area committed suicide at the age of 50 in 2015.
My gastroenterologist is
still practicing medicine in Tallahassee and a quick search of his Google
reviews reveal very little redeeming about his medical group.
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