Living with HIV

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Despite effective treatments, sometimes it’s like being in free fall

Jean-Sébastien Poirier

So far, so good. There’s this weird scenario that keeps running through my head. A man jumps off of the top of a building into the void. After falling 10 storeys, he shouts back to a companion on the roof who’s watching him fall: “Everything’s fine so far.” After 20 storeys, he shouts out the same thing and and again until he gets to the bottom. I know it’s not funny, but maybe someone’s brought out an inflatable mattress to cushion his fall — my fall.

Illustration: Sophie Casson

As I write these lines, I’m battling a fulminant cough and a sneaky chronic cold. It takes me back to the December cold I had after my blood tested positive for HIV, the human immunodeficiency virus, back in February of 2000. At that time, I believed it was the beginning of the end. In fact, nobody thought I would survive — my parents, my brothers, my friends and colleagues. “We understood the gravity of the situation, and everything seemed to be getting worse,” my mother says of her youngest child’s plight.

Without exception, in their eyes I was a condemned man. Besides, I had the same feeling myself for the whole of that first year — the certainty that, like so many others, I was going to die a rapid death. After the initial shock, there was always this dull terror permeating my every act. And, as well, an unbelievable sadness accompanied by misty-eyed observations on the order of, “Well, this is the last snowstorm I’ll ever see — and the last Christmas.” And as spring stirred itself, I’d wonder, would I live long enough to see another one? And so on in the same vein.
All this, despite the effective triple-therapy drug regimen that was rebuilding my immune system and the doctors who told me over and over, “Mr. Poirier, having HIV is no longer an automatic death sentence.”

In 2000, I was 36 and had just landed a job as a cable-services coordinator at a major Montreal television network. I had caught a bug and was feeling exhausted, so I went to a medical clinic one morning. By nighttime, I lay unconscious in the intensive care unit. I had fallen into a coma and was diagnosed with a rare form of viral anemia called thrombotic thrombocytopenic purpura. During my stay in the ICU, the doctors also discovered my HIV-positive serological status. (Needless to say, my contract with the TV network was not renewed.)

It was difficult to disabuse myself of all my prejudice, and the images anchored in my mind since the emergence of the disease in North America in the late 1970s and early 1980s. All those people who’d disappeared off the face of the earth. All I could think of was that the same fate awaited me. But look, I’m still here — and I’m stronger than ever. Nine years have passed since I became a PLHIV (person living with HIV), nine years since I’ve been taking the combination therapy that’s saved my life, nine years since I’ve been confronting my HIV seropositivity as serenely as possible.

Yes, why shouldn’t I be optimistic? For five years now, my viral load (see “Glossary,” p. 38) has been at an undetectable level, and my response to treatment has been exceptional. How can I not view the future with optimism?

Still, sometimes my burden is so heavy to carry that I can hardly drag myself out of bed in the morning. The cruellest thing of all is my isolation. Admittedly, it’s an isolation of my own making — out of pride, certainly — but also out of fear of being judged, condemned and abandoned as the author of my own medical misadventures. So slowly and systematically, I have eliminated from my life anyone I feel is a negative influence.

My solitude is not my disease; it’s simply its most terrible and inescapable side effect. In a way, it’s also the best thing that ever happened to me. This virus sleeping within has prompted me to find inner resources I didn’t realize I had — and the means to anticipate the future without blinking or buckling. I have also learned to live in the present and enjoy the small pleasures of daily life. I try to eat well, and in the past few months, I’ve started going back to the gym. I’ve taken a course of the drug varenicline (Champix) to stop smoking. It wasn’t successful, but you haven’t heard the last from me on this one.

Most of the time, I don’t feel sick. It’s more a question of energy, or the lack of it. When it comes to my health, I have to be vigilant; I can’t take anything lightly. Sometimes people put me down as a hypochondriac, but when my body speaks to me, I listen. The most trivial ache gets my attention. I’m on other medications as well — one to combat high cholesterol and another for high blood pressure. These are the adverse side effects of my anti-HIV combination therapy.

And then there’s always some other mystery to be solved. For  some time now, I’ve been experiencing a fairly disturbing loss of balance. My doctor sent me to a cardiologist and I underwent several cardiac and vascular tests as well as a stress test. Next I had a Doppler ultrasound of the carotid artery, which carries blood to the brain. I was found to suffer from benign paroxysmal vertigo, an inner-ear disorder that impairs balance. It is supposed to resolve on its own without recourse to drugs. Yeah, right!

Illustration: Sophie Casson/Threeinabox.com

I have become a professional patient. I’m Patient Man, who must tame the huge beast that is the health-care system. I have learned to wait. I have had access to the best medical care the system has to offer. Unfortunately, non-medical support services are in short supply. The organizations that provide them to people in my situation are disappearing, one after the other. Budgets are vanishing, despite the urgent need. No, we’re no longer dropping like flies. But still, the epidemic is becoming a pandemic — particularly in sub-Saharan Africa. And over the long term, will the medications that are saving my life now have toxic repercussions? Have I already considered stopping treatment? No, my doctor has never once recommended that. For quite a while now, I’ve dared to contemplate the future in concrete terms. Before, the future was always a blank wall concealing a million possibilities, a wall I never dared to break through. But as more time goes by, and my test results continue to be good, I think I can allow myself to say, yes, so far, so good. And if this trend holds, things will go even better tomorrow. For more on HIV/AIDS, go to www.hc-sc.gc.ca and click on Diseases and Conditions, then on HIV & AIDS. See also http://unaids.org.

HIV/AIDS stats

As of 2007, an estimated 33 million people worldwide were living with HIV.

Since 1981, more than 25 million people have died of AIDS.

Every day, 1,800 children — mainly newborns — are infected with HIV.

—http://UNAIDS.org

Transmission

• Unprotected sexual intercourse (vaginal, anal, oral)

• Shared needles or equipment for injecting drugs

• Unsterilized needles for tattooing, skin piercing or acupuncture

• Pregnancy, delivery and breastfeeding (from an HIV-infected mother to her infant)

• Occupational exposure in health-care settings

Glossary

Human immunodeficiency virus (HIV) A virus that targets and destroys CD4+ and T4 lymphocytes, important white blood cells in the body’s immune system. It is a retrovirus that uses the enzyme reverse transcriptase to transcribe its own genetic material into host cells, thereby hijacking them to turn out new copies of itself. HIV infection weakens the immune system and leaves the body vulnerable to diseases that don’t usually strike healthy people. Untreated, HIV can develop into AIDS (acquired immunodeficiency syndrome), which leads to death in many cases.

Viral load The number of copies of viral RNA in a given amount of blood, which can predict whether the infection is under control or likely to progress to full-blown AIDS. The number of protective T4 lymphocytes in relation to viral load is also counted.

Antiretrovirals Five classes of drugs that essentially prevent HIV from penetrating into host cells or replicating within them. They inhibit various proteins involved in the process of invasion and proliferation.

12 HIV milestones

1800  As scientists now believe, the first cases are transmitted to humans from apes in Africa, probably near the modern-day capital city of Kinshasa in the Democratic Republic of the Congo.

1959  A 25-year-old British man who travelled with the navy dies of a mysterious illness characterized by infections that attack compromised immune systems.

1978  Gay men in the U.S. and Sweden start to show symptoms later associated with HIV infection.

1981  A new syndrome surfaces in New York City, at first attacking homosexual men and therefore called GRID (gay-related immune deficiency). Patients are treated for pneumocystis carinii pneumonia, a fungal pneumonia that only attacks people with compromised immune systems. The same year marks the appearance of Kaposi’s sarcoma, a skin cancer that usually strikes older men in Asia and the Mediterranean.

1982  The name AIDS is coined.

1983-84  Dr. Luc Montagnier and his team at the Pasteur Institute in Paris are the first to identify the HIV virus. Dr. Robert Gallo of Baltimore’s Institute of Human Virology makes the same claim.

1987  The first antiretroviral treatment for HIV arrives in the form of zidovudine, also known as AZT (azidothymidine).

1992  Triple therapy arrives, combining AZT with two other antiviral drugs. AIDS deaths begin to decline in North America.

1995  Adding a new class of enzyme-targeting drugs, protease inhibitors, to existing drugs is the best treatment for the millions living with HIV.

2006  Results are encouraging using gene therapy for HIV.

2008  The Swiss HIV/AIDS Commission asserts that a person who is undergoing successful triple therapy and regular medical monitoring of viral levels no longer poses the risk of sexually transmitting HIV.

2009  With appropriate treatment and a healthy lifestyle, people living with HIV can expect to live a normal lifespan.