What killed Stephen Gendin? His heart and lungs stopped working because of septic shock because he had no white blood cells because of chemotherapy because of lymphoma because of HIV.
This column has long followed the health of POZ Contributing Editor Stephen Gendin. We asked Howard Grossman, MD, his physician and a leading AIDS doctor in New York City, t tell us what led up to his apparently sudden death.
When Stephen visited me shortly before I left in early June for the AIDS conference in Durban, he had been looking OK and feeling good for some time, and had even gained weight recently. But he offhandedly mentioned an ulcer in his mouth. It was quite large—"taking over the back of my throat,” he said—and didn’t look like the average canker sore, but it could have been. We sent him for a biopsy which came back as lymphoma (cancer of the lymphatic system) on July 6. It took a lot of arm-twisting to get Stephen to start chemotherapy right away and not to go to South African as he’s planned.
In my absence, Stephen initiated the chemo on July 13. At first he did OK; he wrote to his friends, “I’m holding up really well; no fatigue, no nausea.” But a few days later he developed diarrhea, which got worse and worse. On July 18, Stephen’s lover Hush McDowell repeatedly called my assistant (he said, though that there were no other symptoms); he got a prescription for tincture and opium to stop the diarrhea. That night Hush called me (I returned to New York that day) to say that the paramedics had been summoned because Stephen was suddenly making no sense and almost passed put on the toilet. I urged Hush to get him to the hospital immediately.
At the hospital, Stephen was conscious, but in and out. Tests found out that he had very low blood pressure, a temperature of 103, virtually no white blood cells and (on X-ray) bilateral pneumonia. In short, he was in full-blown septic shock (bacterial infection that overwhelms the body). He died a few hours later with Hush at his side.
A depleted white-blood-cell count is a frequent complication of chemo, and perhaps of lymphoma also made Stephen more susceptible to infection. In case, once you’re septic, low blood pressure is common, that can lead to confusion and passing out. If he passed out, he could have aspirated (swallowed into his lungs) and developed aspiration pneumonia. Or the bacteria might have spread from his lungs. When you’ve got pneumonia and you’re septic, it’s hard to breathe and your oxygen levels drop. Stephen was placed on a respirator and give massive antibiotics, but it was too late.
I think that unseemly Stephen died of what activist Spencer Cox has dubbed “Old AIDS.” He’s been infected for at least 16years, hadn't any CD4’s for nearly a decade and—after going from one anti-retroviral regimen to another since 1988—still had a high viral load (750, 000). In short, his long suppressed immune system had simply used up all its reserves—and never got any HAART induced CD4-cell lift or viral-load decline to speak of. When his white-blood-cell count crashed a few days after the first dose of chemo. He had nothing left to fight off infection. That may also explain why he didn’t show any visible symptoms of an infection, such as a fever, which required a working immune system.
In the old days, when people were often diagnosed with AIDS quite late, by the time we saw them their immune systems had burnt out and they died quickly. Back then, it was not uncommon for PWAs to get very aggressive lymphomas, unresponsive to chemo, and then to die fast. Today, lymphomas are more treatable for most HIVers, especially those with early-stage, nonagressive types (as Stephen’s appeared to be). Treatment—if it’s initiated quickly, before the lymphoma spreads—usually holds much hope.
But for those like Stephen who have Old AIDS, it’s different. Perhaps the lesson is that we should be far more vigilant. Normally when people start chemo, we can safely wait a week, check the white blood count and then use Neupogen (a drug that helps restore white blood cells) if needed. But with people who have Old AIDS, maybe we should start them on Neupogen when they begin chemo to prevent the white-blood-cell drop that can lead to serious infections. Maybe we should even put them on prophylactic antibiotics to prevent infections.
In the end, deaths like Stephen’s—and I’m seeing more this year than last—are what we always said would happen: We’re keeping people with compromised immune systems alive for a long time, due to both antiretrovirlas and prophylactics against the opportunistic infections that used to kill so many. But the immune doesn’t just fight infections, it also fights cancers—which are much harder to prevent. So those with Old AIDS are liable to get more cancers like lymphoma. And once people get something, they may die quickly. I’m afraid we’re going to lose a lot of people.