Read a story
Judy's Lifeline—Panhematin
It was early April 1997, and I was truly enjoying my job as the
guidance department chairperson of a suburban Philadelphia high
school and my caseload of 10th thru 12th grade students. But the
stresses of the workload were wreaking havoc on my health. I was
always in pain and uncomfortable. The doctors were always prescribing
stronger doses of pain medication or injection therapies. My hospitalizations
were more frequent and for longer periods of time. My internist
at that time insisted that I take a medical sabbatical for a year
to give my body time to recover and to allow me the time for advanced
testing. It was a hard decision to make, but I knew I was not physically
or mentally able to give the 200% effort I gave to my job. So I
decided to do what the doctor ordered.
Then on Memorial Day of that year, Larry and I were in a serious
automobile accident which left me with severe abdominal pain and
a wackier-than-usual neurological state. After a summer from Hell
and the persistence of my doctor, the testing was done and his “gut
feeling” that I had porphyria was verified. After over thirty
years of pain, frequent hospitalizations, misdiagnoses, and multiple
surgeries, I was diagnosed with Acute Intermittent Porphyria in
September 1997. Finding a specialist to handle my treatment plan
proved to be easier than the doctor, Larry, or I could ever have
imagined.
I had been with a neurologist, for over a year after I had passed
out in a gynecologist’s office before a routine exam. He
was treating me for migraine headaches and the neurological symptoms
that I had developed following a hysterectomy. During a visit,
Larry happened to mention the recent AIP diagnosis and asked if
he knew of any physicians in the Philadelphia area who worked with
porphyria patients. Imagine our surprised reaction when he informed
us that he was currently treating two other patients with AIP!!
I became his third.
He had been treating the two patients with a regimen of Panhematin
and D10 with much success. I was admitted to the hospital in December
of 1997 for a pic line insertion and Panhematin infusions. Dr.
Bell closely monitored the process to see how well I tolerated
the infusions and the D10. If all went well, I would be able to
receive my treatments at home. And so l entered the next phase
of my life.
I became a patient of Home Infusion upon my release from the hospital.
My doctor oversees my treatment plan. The Home Infusion pharmacist
assigned to my case and my primary Home Infusion nurse, Janice,
manages my monthly treatments. I’m on my third pharmacist,
Jerry. All three have been outstanding! Janice has been with me
through it all!! Initially, I was receiving infusions of Panhematin
each day for five days every twenty eight days. Sort of mimicking
a menstrual cycle even though I’d had a hysterectomy. Over
the years, we have experimented with the dosage amounts and number
of infusions and days. The meds and supplies are delivered to my
front door the Friday before my treatment is to begin. The Home
Infusion nurse comes to my home to mix and administer the Panhematin
and to assess my condition. They all have become to feel like family.
I also receive D10 via a CADD pump for the entire treatment week.
Fluid bag and pump are housed in a backpack designed specifically
for that purpose. I have a chest wall infusaport, so I’m
home and I’m mobile.
I returned to work on a part-time basis for the 1998-99 & 1999-2000
school years. However, the stress of the job requirements (I never
got the concept “part-time”) a couple of set backs,
and the death of my Father in 2000 convinced me that I could no
longer do the work I so enjoyed. I was able to take a disability
retirement from the school district. Since then, I’ve been
slowly trying to get my life back on track. I don’t want
to jinx myself, but I have not had to be hospitalized for an attack
in a long time! The Panhematin focused treatment seems to work
for me. I don’t believe I would be here today it weren’t
for this drug.
Judy Snyder
|
