My Fight to Receive Outpatient Treatment for Acute Hepatic Porphyria

I was once in the hospital during the holiday season. At that time, I could only receive Panhematin infusions for an acute porphyria attack as an inpatient. I plugged my grandma’s ceramic, tabletop tree in next to the bedside, where its rainbow of colored lights shone brightly. I received a port during that stay, surgically implanted in my chest below my right collarbone.

A month later, I was in a similar attack state and a different hospital room, just down the hall. It was my 34th birthday, and I took my port for a test drive. I stayed for just three days that time, but I knew all the nurses by then.

On being a hospital regular

Here’s an insider secret about being sick all the time: It’s a total drag. I micromanage porphyria triggers in order to live my life, but if I’m not careful, it’s all I talk about. And that gets old fast.

Chronic illness is boring to live with and boring to hear about. Yet people ask all the time. When some unsuspecting person wonders about my rare disease, I assume they’re being polite. I’ll do them a favor and describe my condition as vaguely as possible. Often that satisfies, but occasionally people want to know more.

“What’re you doing in here?” asked the man who recently wheeled me to an abdominal X-ray. “You’re too young to be sick.” I took a deep breath and then dutifully shared some key information about acute hepatic porphyria (AHP) and a little about my story.

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I’m a walking informational brochure about acute porphyria. I can spout off facts while in the throes of a severe attack. I can present my porphyria experience like an elevator speech, ready to recite it when I meet with new providers. If there’s time and interest, I can run down a list of facts about the disease in an order people will likely find most compelling.

For instance, I can tell you that Panhematin is administered to patients as an intravenous infusion during an attack. Several days of treatment may be required, depending on the severity of an attack and the provider’s directions.

During my first year of receiving AHP treatment, I had to be hospitalized once a month for three to four days if I wanted to receive Panhematin infusions. My partner, Michael, and I called these our staycations. The inpatient unit was a mile and a half down the road, directly east from our home. We had a view of the Kum & Go building being constructed next to the sculpture park and access to an outdoor perennial garden tended by talented volunteers. We delighted in watching the seasons change.

Initially, we thought that because the medication was helping, the monthly visits would be temporary. I began making friends with people living with AHP across the country and was grateful to receive care so close to my home.

But as time passed, I learned two important lessons. First, the infusions were part of an ongoing treatment for my condition. Second, other porphyria patients weren’t being hospitalized every time they needed an infusion, because Panhematin is considered safe for outpatient use.

I began to hope for my weekends back.

My fight for outpatient care

I worked with the American Porphyria Foundation to gather information on the standards of care elsewhere and presented a plan for outpatient treatment to any provider who would listen. I learned many administrators weren’t comfortable treating a disease they didn’t know about with a medication they’d never heard of in their outpatient clinics.

I understood and appreciated their concern, but I was still frustrated. I hated taking up a hospital bed every month, stealing time away from patients in more critical condition, when I could be receiving an infusion in a chemo recliner down the hall from my doctor’s office.

Not only that, but I was asking my partner to give up entire weekends to stay in the hospital with me, sleeping on a vinyl love seat and watching Netflix on a laptop over plates of rubbery pasta. I wasn’t the adventurous, lighthearted woman he’d started dating just two years prior. He’d fallen in love with an invalid. Did he feel trapped and obligated to stay by my side?

If my fears turned out to be true, his response would too devastating to bear, and I wouldn’t be able to do anything to change it, so I refused to dwell. At least if I received outpatient treatments, I could take myself. Then Michael and I could sleep in our own bed and engage in nonmedical activities.

My treatment policy eventually changed, thanks to time, exposure to new information, and one influential provider who knew about porphyria treatment and took a stand. Thanks to that doctor, I first set foot in the cancer clinic on a cold March afternoon.

I remember waiting for my first outpatient Panhematin infusion with the distinct feeling that no one knew what a monumental feat it was for me to be sitting there. I settled into the recliner under a warm, scratchy blanket and watched nurses buzzing about in colorful scrubs. Most of the patients sitting around me were battling cancer and twice my age, but I couldn’t see them through my tears.

Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.