The last thing I remembered was yelling at him as he turned his back on me and disappeared. Then, all of a sudden, I was left alone on my couch with my fists clenched. Blinking, I looked around, watching the intermittent screen saver of my TV and the small puddle of drool on my pillow.
Throwing the blanket aside, I walked down the hall. From there, I could see my partner folding clothes in the other room. “You were bad with me in my dream!” I said, pointing accusingly at him. “And now you can’t even kiss me to make up for it.”
My vivid and dramatic dreams are a common joke in our home. Last weekend, however, my nightmare was fueled by the pain and fatigue of COVID-19. The unexpected betrayal of a dream, above all else, was too much. I am fully vaccinated and vigilant to prevent infection, including wearing a mask inside, but the latest variant of COVID-19 virus, BA.5, is incredibly contagious. I locked myself in the bathroom and washed my hands with soap. Although I had tested positive for COVID-19 and had been ill for days, my partner was not. He still felt healthy, and we intended to keep him that way.
Minutes later, I wiped my hands and felt a knock on the door. “Put on your mask,” he said softly. When I opened the door, there he was, his face covered and his arms wide open.
Recommended reading
I remember first experiencing the symptoms of COVID-19 in 2020, along with the rest of the world. Body aches, sleep problems, brain fog – they all fell in the middle of a Venn diagram of COVID-19 infection and an attack of acute porphyria. I used to joke that if I ever had COVID-19, I would probably assume it was just acute liver porphyria (AHP).
Indeed, when my pain began, this is 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 how to seek treatment with monoclonal antibodies from the beginning. What I do know is that the virus caused a serious attack. Gastroparesis and nausea started last Wednesday and prevented me from eating and drinking until the weekend.
The symptoms not only made it difficult for me to distinguish between a porphyria attack and the onset of COVID-19, but the virus did not appear immediately in a rapid home test. I had been lying in bed for three days before a test finally revealed that it was COVID-19 that was causing my body to move. Now it seems silly to look back and consider how he had never before experienced a raw throat and congestion during an attack of acute porphyria.
After testing positive, I scheduled a telehealth appointment. From my bed, I rested the phone next to me on a pillow so I could lie down while waiting for an emergency doctor to join the call. I mentally prepared for an appointment that would be a part that would educate the doctor about AHP and a part that the doctor would give guidance to.
Seeking medical attention when living with a rare disease requires self-defense, even when the appointment is related to the treatment of a virus such as that caused by COVID-19. Every substance processed by my liver could affect my porphyria and cause an attack, so it’s important for doctors to know that what they prescribe me is safe. I have been fortunate to have generally patient and curious GPs.
Once the emergency physician learned more about my situation and where I was with my COVID-19 disease, I was unwilling to recommend a course of action without the consent of my specialist. My initial annoyance about this dissipated when I learned that an antiviral pill that is often used to treat COVID-19 is not safe for patients with acute porphyria.
“One of Paxlovid’s drugs appears as unsafe on the NAPOS website,” Dr. Karl Anderson wrote to me in a recent email, referring to the Norwegian Porphyria Center’s Porphyry Drug Database. This database indicates that the ingredient Paxlovid ritonavir is not safe for patients with porphyria.
Anderson is a gastroenterologist in the medical branch of the University of Texas at Galveston and a leading expert on porphyria. It is recommended that people with porphyria take as many precautions as possible to prevent COVID-19 infection and be completely vaccinated. If you have COVID-19, like me, Anderson recommends seeking individualized treatment with your local doctor to avoid unsafe medications.
Like so many people at high risk for serious complications of COVID-19, he was afraid of suffering from it. I am appalled 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 preventing transmission and preventing infection.
When it comes to returning to the world, I will continue to play safely.
Note: Porphyry News it is strictly a news and information website about the disease. It does not offer 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 health care provider with any questions you may have about a medical condition. Never ignore professional medical advice or delay looking for it because of something you read on this website. The opinions expressed in this column are not those of Porphyry News or its parent company, BioNews, and intend to spark discussion on porphyry-related issues.