AUSTIN, Texas — An Austin man is sharing his experience with monkeypox in the hopes that it will cause the healthcare system to better care for the needs of monkeypox patients and encourage others who are infected to advocate for their own health.
The man asked for his name to not be included.
"By far the worst pain in my entire life,” he explained over a zoom call, as he was still in quarantine.
This Travis County resident first had a fever on Aug. 9. He thought it was side effects from the monkeypox vaccine he received just days before.
"You know, you think you're taking the correct steps,” he said. “Of course, there's always something, you can always be more careful, right? Okay, here we are."
But the symptoms progressed and he developed swollen lymph nodes and soreness. A couple of days after that, he developed lesions in multiple areas and had extreme pain.
Since he thought he may have monkeypox, based on what he had heard of and read online, and was in pain, he went to the emergency room. That is where he said the doctor told him they had never done a monkeypox test, but they would do one for him.
While he was there, he got a text that he may have been potentially exposed, but the nurses didn’t seem to take it very seriously.
"She said, ‘Oh, I really don't think it's monkeypox’ as she was swabbing me," he said about the nurse. "'If it was, I'd have to be in like full PPE,’ which she was not. So, I was like, okay, this is frustrating. But like, they're testing me."
They said the test results would take five days, but now eight days later, he still hasn’t seen them in the patient portal and has not received a call. He has also tried calling. His STD panel he did while he was there came back with the results, and they were all negative.
Although he does not recommend doing your own research, he said he felt like he had no other choice but to research for himself, to find out how other people were treating their symptoms.
"I was on Reddit, I was on TikTok, reading people's firsthand accounts,” he shared.
He went to the ER two more times, saying the symptoms were unbearable. He was hoping to get Tecovirimat, known as TPOXX, an antiviral medication used to treat certain cases of monkeypox.
"I was sick, right? I was in a ton of pain. And ideally, you expect, especially going to the ER, you expect them to have at least some knowledge of what they can do to help you,” he said. “I felt like they just didn't know what they could do to help me."
“In fairness to them,” he added. “I don't think there's a lot of information available.”
After four days of intense pain, taking pain medications prescribed by doctors that were not working well, and finding out his potential exposure tested positive for monkeypox, he got a telehealth visit with an infectious disease doctor at an Austin clinic, who prescribed him TPOXX.
"As soon as he said that he'd be able to get it to me that afternoon, I lost it,” he said of the relief he felt.
He said he hopes the health care system will learn to better care for patients and encourages patients to advocate for themselves.
"Don't be afraid to be resourceful, and fight, and find information, and try to advocate for yourself when you can,” he said.
The Centers for Disease Control and Prevention (CDC) said patients may be eligible for TPOXX if they have certain severe symptoms or are at risk of severe disease. Austin Public Health said they follow CDC guidance, and right now, they have enough TPOXX medication to meet demand.
The Texas Department of State Health Services said that once a person has been diagnosed with monkeypox, their health care provider can prescribe the antiviral medication TPOXX if their patient meets the criteria. DSHS added that the provider works through the local health department to get the courses of the antiviral medication for their patient.
For more information on monkeypox testing and vaccines, click here. You can also look into options through CommUnity Care and Kind Clinic.
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