Two days after Kevin Kwong flew home to California from New York Pride, his hands were so itchy it woke him up. He thought it was eczema.
“Everything started rapidly getting worse,” Kwong said. “I started to get more spots on my face, more redness and [the spots] started leaking fluid. The rash expanded to my elbows and my hands and my ankles.”
As the U.S. monkeypox outbreak continues to expand, people who may be positive are grappling with an unprepared health system, while at the same time suffering from debilitatingly painful skin lesions. Kwong’s frustrating experience at urgent care clinics, virtual appointments and two emergency rooms in search of an accurate diagnosis was plagued with dead ends and delays.
“Your body is being taken over by this thing that you don’t understand. And you have nowhere to go, so it’s both painful and terrifying,” Kwong said.
Kwong initially treated the rash himself with the topical steroids he uses for eczema. When that didn’t work, he made his first virtual visit from his home in Emeryville, California. The nurse diagnosed him with herpes, and prescribed an antiviral medication.
Over the next few hours the rash quickly spread to more of his body. Alarmed, Kwong went in person to an urgent care clinic. The doctor agreed with the herpes diagnosis, and added another — scabies.
“My spots were concentrated on my hands and my wrists and feet and elbows, which are prime locations for scabies,” Kwong said.
The urgent care doctor didn’t think it was monkeypox — Kwong’s spots were clustered together and looked different from the monkeypox rash pictures the doctor had seen.
“Depending on where I was with my symptoms, and who I was speaking to, I was getting different answers,” Kwong said. “I’m learning through this experience that dermatologists work like bankers hours. So it’s really hard to get in touch with one if it’s not standard hours.”
Over the July 4th holiday weekend, Kwong frantically reached out to anyone he thought could help get him answers as his symptoms worsened.
“I tried to contact doctors, I knew friends of friends who were dermatologists. And I was scheduling lots of remote visits with my provider to try to speak with nurses and physician assistants. Just trying to get a proper diagnosis of what was happening to me. Because after each time I spoke with someone, I just got rapidly worse. And it was really freaky,” Kwong said.
During another virtual appointment in the middle of the night, a nurse noticed the rash had spread toward his eyes and told him to go to the emergency room immediately. It was there that doctors said Kwong may have monkeypox. But they were unprepared to handle a potential case.
“They were researching while I was in this [patient] room, and back and forth on the phone at the CDC. I expected myself, as a patient, to be in the dark, but I didn’t realize how little information was also given to providers and how unprepared they were as well,” he said.
His lesions were swabbed, but the monkeypox test result wouldn’t come back for at least a week. He spent 12 hours in the emergency room before being sent home. They told him to come back if he developed a fever or started vomiting
“At this point, I was just miserable. I had sores in the back of my throat, in my mouth all over my body,” he said. “I was just delirious because I couldn’t sleep more than an hour or two at any given time.”
He said the pain was inescapable.
“I estimated 600 to 800 tiny sores,” he said. “And it’s just sort of under the surface of your skin, there’s like a small piece of your flesh being taken out and deteriorating. It feels like [when] you stick your hand in water that’s too hot, sort of that feeling but you cannot take it out. And so it’s constant.”
Scared and exhausted as the rash continued to get worse, Kwong broke down crying after seeing himself on screen during a FaceTime call with a friend.
“I was even scared to just go to sleep because I didn’t know what I would wake up to. I didn’t know if my symptoms would progress in a dramatic and terrible way while I was asleep, while I couldn’t watch what was happening to me,” Kwong said.
After days of appointments and very little sleep, Kwong decided to make the trip to the UC San Francisco hospital. It was a tough decision. He had just spent 12 hours in another emergency room that same day. But he’d heard through a friend that UCSF was treating monkeypox cases, and a virtual care nurse had urged him to go.
When he arrived at the UCSF emergency room he was separated from the other patients given oxycodone for the pain, and again swabbed for a monkeypox test.
The next day UCSF infectious disease specialist Dr. Peter Chin-Hong contacted him, after seeing pictures of his rash.
“I thought, wow, this is really, really extensive disease,” Chin-Hong said. “I’ve seen other cases of monkeypox before, but they’re very limited. I would say Kevin is probably in the top 5% of severity of diseases, and most people probably wouldn’t get it as severe as Kevin.”
Because the rash was close to Kwong’s eyes, if left untreated it could have caused him to go blind. Dr. Chin-Hong said the case was so severe the hospital okayed a prescription of TPOXX. That’s an antiviral that’s been given special clearance by the FDA to treat monkeypox only in certain circumstances.
“I was shocked by how fast Kevin improved. It was almost like he was a turbo rocket on the way to recovery,” Chin-Hong said.
Kwong said he likely contracted monkeypox from a guy he hooked up with during New York Pride. That man did test positive. Despite Kwong’s quick turnaround on the antiviral, he still hasn’t tested positive. Chin-Hong says health workers may not have rubbed hard enough to get live cells for the monkeypox test….
The above comes from a July 22 story on LAist.