We need to talk…
One’s HIV consultant is not too far from a demanding relationship: they suck the life out of you – the vampiric nurses, and can get incredibly pissed off if you turned up late to your rendezvous because the tube was shut.
But you can’t live without them. In the nurses case, almost literally. So, like in all relationships, whether you want out or not, you always tense a little when they send you 3 simple words that can turn your world upside down: “I love you.”
No, wait, wrong ones.
“Please, call me…”
That’s more like it. A consultant’s equivalent to “Need to talk…”, here comes the dreaded chat you know is about to happen, even what is going to be said, but you don’t want to believe it. And, when you are used to receive one liner emails about your results (CD4: 624, VL: UD, Cholesterol: 7, bit high, any history?), a simple break in the pattern can forewarn of impending doom. Dramatic, much?
Anyway, I was right: I called her and, shocker, she said the words: “It did not come back as undetectable. It’s at 160.” Whuuuuut?!
Take meds, draw blood, be undetectable, REPEAT
No longer fool proof, the cycle was broken! As I put down the phone, questions kept on coming. Had I missed a dose? Was changing medication a few weeks earlier a bad idea? Was it the cause? Could I get back on another regimen successfully or had I fucked this up?
I immediately told a friend, looking for reassurance, which he gave me. These things happen, it’s a blip, you’ll be fine; he said. A what? A blip… I had heard the term, seen it flying around, but I wasn’t too sure what it entailed. Pretty much like HIV before diagnosis, I was in the no-knowledge-land of ‘I don’t need to know about this until it affects me’. Kind of.
Except now, it did affect me, so I was curious. What is a blip? What does it mean? Where do they come from? And DOES THIS MEAN I’M GOING TO DIE IN MY SLEEP TONIGHT?
The pursuit of VL-less
As it turns out, it doesn’t take long on the Internet to be reassured. Blips are quite common and, provided that they are just that and not an early sign of treatment failure, apparently harmless.
The clue is in the name, really: undetectability. The error can be to assume it is synonym with suppression. In fact, when testing for HIV, the undetectable threshold of 40-50 copies/ml is not so much a concerted decision from the medical world as it is a technical one: my lab just does not have the technology yet to refine the measurement when below that line.
For all I know, my viral load might have been 10. Or 20. Or 30. Or 40. And/or fluctuating in between ever since it was low enough for me to be considered undetectable but, really, not having completely suppressed the virus.
Whilst it’s all numbers and maths I don’t understand, knowing that the starting point to reach 160 copies/ml may not have been 0 but 40 made it just a little less frightening.
There are other factors to consider. It could have been an STD or a flu cranking up the numbers, a recent vaccination maybe, anything that would have put the immune system under attack or reactivated latent HIV reservoirs. It is a pesky virus, one that can hide in sleeping cells only to be awaken when the body is defending itself.
Fortunately, I had had vaccinations the day before my blood test, so it was something to hold onto: a reasonable explanation that did not leave me questioning every medication dose of the previous 4 weeks and whether I had taken it at the right time with the right amount of food. Doubt is as insidious as hope, however, and I was still left wondering if I had done something wrong.
I was told to come in again for more blood to be tested, and that was great because who doesn’t like needles in their arms every other day, am I right?! Mind you, sarcasm aside, I have learnt not to care; if anything I enjoy telling the nurse which arm to go for, why, and the story of the time one nurse tried the other arm and had to get a colleague to do it after she failed thrice. Fun times.
Leave your message after the blip.
Blips are a little scare, of course, but they are just that – an isolated incident. The real fear now was a repeat of results, turning an incident into a trend. The implications then would be serious; as it could be the virus had become resistant to my medication, a place no HIV-positive patient wants to be in.
I had a voicemail a few days later. Another case of “call me back”. It must be bad, I thought, or she would just say that it was fine in her message. Uncertainty is a bitch. I called her back straight away, both anxious and hopeful to hear the news.
It was good news. Back to undetectable, the former blip was deemed of no significance, for now. Shit happens.
Doomsday is not for today. Nor tomorrow. For if and when I have another blip, I will be ready this time. Ready to know that I stuck to my meds everyday of every year. Ready to know that my body is looking after itself and doing a fine job at it. It is time to let the brain rest a bit because HIV will not kill me… but unnecessary stress sure could.
HIV-1 viral load blips are of limited clinical significance – http://m.jac.oxfordjournals.org/content/57/5/803.full
More on the topic:
Viral Blips – http://www.aidsmap.com/Viral-blips/page/1729801