Our Nightmare

Savannah was still having pain around her middle, in addition to the new worrying symptoms of numbness in her hand and foot, dizziness, and blurred vision. I tried to make an appointment with her doctor, but because of stupid insurance issues that would take an entire blog post to explain, I couldn't do that. So, I brought her back to the ER for the third time on Wednesday. While I was there with her, Austin texted me from the hospital where he was still a patient.

"I'm dying."

"Dying how? Pain? Nausea? Just feeling bad?"

"No, really dying."

"You're not dying, Cameron." (Ferris Bueller reference that was supposed to make him laugh)

"Yesterday, maybe an hour before you got here, a doctor came in and said there was more testing to be done, but the initial results were that I was HIV positive. I just kept crying. That is why my eyes were red. I'm dying, Mom."

My heart stopped for a minute and a wave of nausea flooded me. I felt like all the air had been knocked out of my lungs; like someone had just punched me in the gut.

"WHAT?!!!!!!!!!!! Are you kidding me?"  It's a joke, right? He has to be kidding.

"No."

"Why didn't you tell me yesterday?" Ohmygosh, the doctor told him while he was all alone! And I haven't been there all day! My poor Austin!

"Because the two main things that cause it are sexual contact and sharing needles. I didn't want you to assume anything. I've never done any of that."

"Then it isn't possible. The test is wrong, Austin. You don't have HIV and it was really wrong of him to say something like that before the test was complete. What exactly did he say? What kind of @$$%&(# tells a kid something like that while he's all alone?"

"He said, 'So we got the initial results back from your blood test and they're positive. They aren't final though so there will be another test. Any questions for me? No? Okay.'"

"You donate blood, Austin. They screen for this. You've never been notified of any problems. You have no risk factors. You don't have HIV. False positives are common. That's why they HAVE to do a follow-up test if there's ever a positive."

"But I'm sweating a ton and I looked it up and night sweats are a symptom of HIV."

"So is menopause, cancer, fever, infection, sleeping on a hot, plastic hospital bed with compression things wrapped around your legs, and a whole host of other things.

"Then I have cancer."

"You've been tested for everything, Austin. Cancer doesn't develop overnight."

"It might even develop faster than overnight in my body. Maybe my body is a cancer magnet."

"Stop it!"

"I'm a cancer hotspot."

"Stop it! You don't have HIV or cancer."

"Because it's clearly developed into AIDS already."

"Stop it!"

"Even the AIDS infected cells have cancer which in turn produced cancerous AIDS cells which kept multiplying to make an AIDS/cancer hybrid. Which, despite the name, is actually beneficial to nail and hair growth."

"Well, it's a good thing your sense of humor is back."


On Thursday, the doctor saw Austin before I got to the hospital once again and Austin asked him, "Do you know the results of that test?"

"No, it takes a while. Just call my office after you're discharged," he said nonchalantly, brushing him off.

When Austin told me how he responded to him for a second time, my head exploded. I raced to the hospital and marched straight into the patient advocate's office. I explained how the doctor dropped this bomb on my son and how I was positive the results were inaccurate and how I felt he should have waited until the test was complete to say anything. She said pretty words. "I understand why you're frustrated. I'll have the nursing manager talk to you."

I told the nursing manager how the doctor dropped this bomb on my son and how I was positive the results were inaccurate and how I felt he should have waited until the test was complete to say anything. She said pretty words. "I understand why you're upset, blah blah blah. Some doctors need better bedside manners."

Instead of talking to the doctor, she sent a counselor to Austin's room who left him with information about HIV and AIDS and where to turn for help. When I explained to her that he had ZERO risk factors and it had to be a false positive, she gave me a pitying look. Oh look at this mom who is in total denial.

"He's a good kid! He's never done anything that could possibly get him infected. He even donates blood regularly!"

"Why does he donate regularly?" she asked accusingly.

Ohmygosh, she did NOT just say that! She thinks he donates to get checked! Listen lady, some people donate because it's a good thing to do! Some people are raised to know the importance of donating their used items, their time, talents, and yes, even their blood to others who can benefit from it.

Here's the thing though. Everyone I talked to had the same attitude. You get diagnosed with cancer and everyone is sympathetic. No one can imagine a more horrible fate. But you get diagnosed with HIV and immediately you're looked down upon. You're that kind of person. There is no sympathy; just judgement and condemnation. It's horrible and I don't wish it upon anyone.

I camped out in Austin's hospital room today, determined to finally get a chance to speak with this doctor. Although I'd been by the hospital every single day, I had to go back and forth between Austin and my other kids so I'd missed him every day. When he walked in, I said, "Oh so you're Dr. Korman! That was really crappy how you dropped that bombshell on my son when he was all alone. Do you have kids? No? Well, that was really not cool! And why would you tell him he's positive before the testing was even done?"

He didn't have much to say.

"What test did you run?"

"Uhhh, we checked for (much stammering) antibodies."

"So you just did the one test? Have you done a western blot yet?"

"Yes, they were both positive."

My stomach lurched. If that's true, then ohmygosh! Oh my gosh. Oh God.

"I want to see those results," I demanded. There is no way it's positive. No way!

The doctor disappeared and came back a few minutes later.

"Oh um, I guess we didn't do both tests. We're waiting for the confirmatory test."

"You're doing a western blot?"

"No, we don't do that anymore. That's outdated. We're doing an RNA test."

"And how long will that take?" I demanded.

"I don't know."

"You don't know? Ballpark. 3 days? 3 weeks? 3 months? How long?"

"Hopefully soon. We don't do it here. It's sent somewhere else. Jacksonville, I think. You can call the hospital when he's discharged. You could ask for medical records. But they probably won't give you the information. I guess you could follow up with your doctor and have him call the hospital and try to get it."

"Are you kidding me?!" I resisted the urge to slap him. (Although in retrospect, I kinda wish I had. It would have been worth any trouble I received from it.)

Eventually, he gave me his card and said I could call his office to get the results. Then he examined Austin and discharged him.

Before we left, he came back to the room and handed me a paper. "I have the results. The RNA test is negative. I'm not sure what this means."

Sheesh! Even I know what it means! He doesn't have HIV! How do you not know this??? Are you really a doctor? I called my friend who works at another hospital and deals with this stuff. She said the doctor was wrong; western blots are still used to confirm positive tests. She also said that the initial test was indeed a false positive and he definitely does NOT have HIV. The RNA test is a very specific one.

Austin lived through this nightmare for four days. Although I think I had him convinced that there was no way he could possibly have HIV, it was still hanging over his head. He got depressed. He said he'd kill himself if he had HIV. And it all could have been avoided if this doctor had kept his stupid mouth shut until the confirmation test came back negative. Or if the doctors had listened when Austin answered their questions, stating he had no risk factors at all.

And, before anyone asks, Savannah's still not feeling well and we still don't have a diagnosis although the hospital told her she tested positive for methamphetamines because, once again, they didn't listen when we listed off the OTC medications she was taking. The same reason why Austin's arm puffed out in hive-like bumps from his IV because they didn't listen when he told them his IV hurt and didn't feel right when medication went in.