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Acute Intermittent Porphyria (AIP)
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 once a day for five days out of every 28 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 come 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 (not in the hospital) 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 setbacks, 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 treatment seems to work for me. I don’t believe I would be here today it weren’t for this drug.
