The last thing I remembered was screaming for him as he turned his back on me and disappeared. Then suddenly I was alone on the couch with my fists clenched. Blinking, I looked around, noticing the flashing screensaver on my TV and the small puddle of drool on the throw pillow.
I threw off the blanket and stepped out into the hallway. From there I could see my partner folding laundry in the other room. “You were mean to me in my dream!” I said pointing at him accusingly. “And now you can’t even kiss me to make up.”
My vivid and dramatic dreams are a running joke in our house. Last weekend, however, my nightmare was fueled by pain and fatigue from COVID-19. The unexpected betrayal of a dream, on top of that, was too much. I am fully vaccinated and remain vigilant to avoid infection, including wearing a mask indoors, but the latest variant of the COVID-19 virus, BA.5, is incredibly contagious. I locked myself in the bathroom and scrubbed my hands with soap. While I had tested positive for COVID-19 and been sick for days, my partner had not. It still felt healthy and we intended to keep it that way.
Minutes later I was wiping my hands and heard a knock on the door. “Put the mask on,” he said gently. When I opened the door, there he was, face covered and arms spread wide.
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I remember first learning about the symptoms of COVID-19 in 2020, along with the rest of the world. Body aches, trouble sleeping, brain fog—they all fell squarely in the middle of the Venn diagram of a COVID-19 infection and an acute attack of porphyria. I used to joke that if I ever got sick with COVID-19, I would probably assume it was just Acute Hepatic Porphyria (AHP).
Sure enough, when my pain started, that’s exactly what happened. I will never know if the severity of my symptoms or my recovery time would have been affected if I had known to seek monoclonal antibody treatment early on. What I do know is that the virus caused a serious attack. The gastroparesis and nausea set in last Wednesday, preventing me from eating and drinking for the rest of the week.
Not only did my symptoms make it difficult to distinguish a porphyria attack from the onset of COVID-19, but the virus didn’t show up immediately in a quick home test. I was bedridden for three days before a test finally revealed that COVID-19 was causing my body to go haywire. It seems silly now to look back and think how I had never before experienced a sore throat and congestion during an acute attack of porphyria.
After a positive test, I scheduled a telehealth appointment. From my bed, I propped my phone next to me on a pillow so I could lie down while I waited for an emergency doctor to join the call. I mentally prepared for an appointment that would involve one part of me teaching the doctor about AHP and another part of the doctor giving guidance.
Seeking medical care while living with a rare disease requires self-defense, even when the encounter involves treatment for a virus like the one that causes COVID-19. Any substance processed by my liver can affect my porphyria and trigger an attack, so it’s important that the doctors know that what they are prescribing is safe. I have been fortunate to usually have GPs who are both patient and curious.
After the ER doctor learned more about my situation and where I was with my COVID-19 illness, she was reluctant to recommend a course of action without my specialist’s consent. My initial irritation at this dissipated when I learned that an antiviral pill often used to treat COVID-19 is not safe for patients with acute porphyria.
“One of the drugs in Paxlovid is listed as dangerous on the NAPOS website,” Dr. Carl Andersson wrote to me in a recent email, referring to the Norwegian Porphyria Center’s porphyria drug database. This database notes that Paxlovid’s ingredient ritonavir is not safe for patients with porphyria.
Anderson is a gastroenterologist at the University of Texas Medical Branch in Galveston and a leading expert on porphyria. He recommends that people with porphyria take as many precautions as possible to avoid infection with COVID-19 and get fully vaccinated. If they get sick with COVID-19, as I did, Anderson recommends seeking individualized treatment with their local doctor to avoid unsafe drugs.
Like so many people at high risk for serious complications from COVID-19, I was afraid of getting it. I am concerned that treatment options are limited for those of us with porphyria, but I am also grateful that we have come a long way with what we know about avoiding transmission and preventing infection.
When it comes to getting back into the world, I’ll continue to play it safe.
Note: News from Porfiria is a purely news and information website about the disease. Does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your doctor or other qualified medical professional with any questions you may have about a medical condition. Never disregard professional medical advice or delay seeking it because of something you read on this website. The opinions expressed in this column are not those of News from Porfiria or its parent company, BioNews, and aim to spark discussion on issues related to porphyria.
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