No longer a death sentence

When Ken Lucero was diagnosed with human immunodeficiency virus (HIV) in 1988, he prepared to die. Two decades later, his story shows how treatment advances have changed what once were terminal diseases into chronic illnesses that people live with for years, often until they die from other causes.

“Back then HIV or AIDS was a death sentence,” recalls Lucero. “I had friends dropping like flies.”

In 2007, after struggling for several years with health problems and consulting with 12 specialists, Lucero’s prognosis turned grim: six months to live. He moved from Dallas back to Lawrenceburg to be near family and within three weeks was treated at Vanderbilt University Medical Center by Comprehensive Care Center Medical Director Stephen Raffanti, M.D., associate professor of Medicine.

“He said, ‘I think there’s something else going on with you,’” Lucero recalls. He had lost vision in his left eye, one clue that informed a diagnosis of infection at the base of the brain and a related partial blockage of the carotid artery. After a delicate surgery Lucero improved, but other health hurdles — including a PICC line infection — brought him to Vanderbilt again early this year.

“Nobody knew if I was going to live or die,” he says. “I couldn’t feed myself, I couldn’t dress myself, I couldn’t bathe myself.”

That’s when Raffanti asked him if he wanted to go home, and if he wanted to continue liquid nutrition. His answers were “yes” to going home, and “no” to liquid nutrition.

Back in Lawrenceburg, Tenn., Lucero continued on antibiotics and regained strength as he was cared for by his mother and two nurses — one his sister. By his April appointment at the Center, everyone was amazed at his condition.

In 1994, the year the Comprehensive Care Center opened, Raffanti says he lost 350 patients.

“It was really just a chronically progressive illness,” he recalls, and about the best doctors could do was to get to know their patients and understand their wishes for deathbed care.
“We got very good at diagnosing the complications of AIDS,” he says, many of which were relatively rare until then. “We got much better at treating them.”

Then, in 1996 new drug treatments aimed at controlling the underlying virus became available; unexpectedly, patients’ immune systems grew stronger with this intervention. Mortality rates plummeted. Today, with proper medication, HIV/AIDS patients can expect to survive for decades.

“The bottom line is most of our patients will not die of HIV disorders,” says Raffanti. Patients still must come to terms with a chronic illness that requires lifetime medication and limits lifestyle choices, while doctors have to refocus on treating these patients’ aging-related illnesses, some of which are caused and exacerbated by treatments, Raffanti explains.

It is imperative to help patients “chart that very dangerous course through the final stages of an illness,” preferably by collaborating and not simply through crisis intervention. Some patients will choose hospice care, to “die in control,” he says.

When he’s talking and listening to patients, Raffanti says some days he is keenly aware the waiting line is getter longer on the other side of the door.

“It’s extremely time-consuming and energy-consuming to do it right,” he says. But doing it right is what the patients want. “Some doctors are recognizing that patients have knowledge, that they are comfortable making choices,” Lucero says. “Why not allow them that?”
-ELIZABETH OLDER