I volunteered as an HIV/AIDS educator in classrooms and visited with AIDS patients at Terence Cardinal Cooke Health Care Center in New York. While this may have qualified me for an invitation in the Peace Corps, it was the medical review process that really showed me a thing or two about AIDS. Here’s the story…
I sat in the waiting room of the VA, relieved that after many wrong buildings and rooms, I had finally found the right place. The nurse called my name and I followed her back. We sat down and discussed all of the paperwork I had brought and the tests I would need to take.
“While your here,” she asked, “would you like your flu shot?” I told her I didn’t really care. I never usually get them, and rarely get sick. “Well, they’re right here,” she said, “and I can give it to you now. We really recommend them.” Okay, I said. I guess it can’t hurt.
I received a flu shot, along with a tetanus shot and a TB skin test, then went back for my labs. The tech pulled vile, after vile, after vile from his box. “How many are there?” I asked. Even he was a little shocked. “Ten,” he said. “There’s a lot of tests.” I left with an appointment to return in three days.
Three days later…
I arrived to my appointment and went back with the nurse. Although I was only there to check the TB skin test, I was curious about the labs. “Did you get any of my results back yet?” I asked. “Hmm…” she said, “Let’s see. Yep, looks like some of them are back, let me just print these for you.”
She seemed to be having trouble with the printer, so she grabbed the lab tech and asked for assistance. She then handed me papers with a list of letters and numbers. I asked her what they meant. The nurse looked at them and handed them to the lab guy. He started explaining, then stopped. “Maybe we shouldn’t be giving these to you now. We should wait for the doctor to go over them with you.” I wondered out loud what that meant, and he told me that tests can mean different things. He pointed at a few numbers that appeared outside the normal range. He left to talk to the doctor (whom I could see across the hall) and returned, saying I would need to make an appointment next week. “Well your TB test is negative,” the nurse offered.
Next week…
I arrived for my appointment, ready to face my anxiety. I sat at the desk across from the doctor as she rifled through papers looking at numbers. “Everything is fine,” she said. “Sometimes numbers are little to one side or the other, but I don’t see anything too alarming here. You’re tests are fine.” (Whew!)
“We’re still waiting on the HIV test,” she said, “but that can take a little longer. I’ll call you when it’s ready.” Then added, “Oh.. wait… who’s is this?” She picked up a paper and scanned the type. “Oh… I guess this is yours.” She set the paper down and looked up. “Well, it looks like you are HIV positive.”
Her tone was so calm, so matter-of-factly, you’d think she was telling me the color of my hair. “What do you mean?” I asked. I raced through my mind, searching for anything to explain this.
“We still need to send it in for a second test,” she said.
This isn’t right, this isn’t happening, I thought. I asked how often the test comes out wrong, and she said she wasn’t sure. I further questioned what might make it come out wrong and she said she didn’t know.
“Well,” she asked, “What types of behaviors do you engage in? Unsafe sex? Drugs?” No, I told her. “Not even cocaine? you know you can contract it by sniffing, too.”
My mind went in a hundred million directions. Am I going to die? Oh my god, I might die. But then I’m thinking this can’t be right. And what research have I missed in the last five years that determined HIV is transferable though sniffing? “I thought you could only get it through blood, or unsafe sex?” I asked.
“Well, no.” she responded. “You can get it other ways. You have to think about the kinds of people who do drugs. If you’re with people sniffing cocaine, you’re putting yourself at risk.”
Well wait a minute, no. I was getting off track. That wasn’t me, I hadn’t put myself at risk. “When will the second test come back?” I asked. “This can’t be right.”
“Well,” she said, “let me just call the lab and see.” She picked up the phone and dialed, asked a few questions and hung up.
“It will take about a week,” she said. “But 80 percent of the time, it comes back positive.” I sunk into my chair and felt my face getting hot. As I opened to speak, the tears rolled out. My voice was shaky. “So.. there’s an 80 percent chance I’m HIV positive?”
“Yes,” she said. “But don’t be so worried. These days, with medications, its curable.” Again, I wondered what research I had missed in the last five years. “I have a few patients who have it,” she said. “They are fine, they lead normal lives.”
I could not stop the tears. I tried to compose myself as I realized this was the most afraid I’d ever been in my life. The doctor looked up at me and said, “They’re going to wonder what happened to you out there.” I asked her for a tissue.
I left feeling stunned, wondering if I should try to drive or call for a ride. I picked up my phone and opened Google. I needed more information. As I searched, countless pages came up relating false HIV tests with the flu shot. I read every page I could find, then drove home and read more. This was it, I thought, it was the flu shot. A week later, the doctor confirmed I was negative.
While my story may end in relief, for many it doesn’t. In 2009, 1.8 million people in sub-Saharan Africa were newly diagnosed with HIV(UNAIDS). And while the western world has it largely reduced to a chronic disease (not cured), in Africa it is often deadly.
As I embark to try and change the impact of this disease, I will not forget the emotions that accompany a positive diagnosis. I will take with me an understanding of how even our Western doctors can be misinformed and judgemental, and I will take with me as much compassion as I can for everyone affected.
(And for those of you still wondering: blood, semen, vaginal fluids and breast milk are the only ways the disease can be transferred.)
As I fervently try to pack for this two-year adventure, I’ve become obsessed with packing lists. What did other volunteers bring? What did they not bring? What do they wish they’d have brought?