Because amphotericin damages the kidneys, before starting him on the drug, Nash and his team had analyzed Dave’s kidney (renal) function and decided it was not as strong as they would like. They checked him into the hospital for the duration of the treatment so that his renal function could be closely watched. There is a substance in the blood called creatinine, a waste product of muscle use, which the kidneys filter out at a regular rate. When creatinine levels rise, it means the kidneys are not functioning properly. By checking creatinine levels daily, the doctors at NIH can monitor how much kidney damage is taking place. In the early stages such damage is almost always reversible.

Dave then described what it was like to get the drug, which echoed many of Nash’s warnings. The total process, he said, took seven to eight hours. After the nurses settled him comfortably into a lounge chair and attached an IV, they conducted a battery of blood tests to make sure his numbers were good. Then they ran a liter of saline solution into his body, diluting his blood so that the kidneys would be able to flush the drug through quickly.

The saline drip took an hour, followed by a fifteen-minute infusion of Benadryl, to tamp down any allergic reaction he might have to the amphotericin. Meanwhile, the nurses hung an evil-looking opaque brown bag, which contained the liposomal amphotericin.

When all is ready, Dave said, they turn a valve that starts the amphotericin. The liquid is expected to spend three or four hours creeping out of the bag and into the patient’s arm.

“So what happened when you got the drug?” I asked.

“I watched that limoncello-colored solution come down through the tubes and go into me,” Dave said. “And within seconds—seconds!—of it entering my veins, I felt a big pressure on my chest and a pain in my back. I felt this profound tightness in my chest, with really difficult breathing, and my head felt like it was in flames.”

Dr. Nash had immediately stopped the flow of the drug. These were, in fact, common side effects of starting the infusion, caused not by the amphotericin itself but by the tiny lipid droplets that, for mysterious reasons, sometimes fool the body into thinking a gigantic foreign cellular invasion is taking place. The symptoms usually go away fairly quickly.

In Dave’s case, the doctors let him recuperate for a few hours, and then they pumped him full of more antihistamines and started him on the amphotericin again, at a slower rate. This time he made it through. They gave him a second infusion the following day. But late that evening, Dr. Nash came in with bad news: “You flunked amphotericin.” Dave’s creatinine levels had soared; his kidneys had taken a serious hit. The doctors had decided to halt the treatment for good.

They were going to keep him there, he said, for the rest of the week, monitoring his renal function to make sure he was properly recovering.

“So what now?” I asked. “How are you going to get cured?”

He shook his head. “Fuck if I know.” He said the doctors were going to wait and see if the two doses had knocked out the leish, which was possible but unlikely. It was a slow-acting disease and there was no need to rush into another potentially toxic treatment. In the meantime, the NIH would try to get the newer drug, miltefosine, for him. A course of miltefosine can cost close to twenty thousand dollars, compared to around six or eight thousand for ampho B. Even though miltefosine was unavailable in the States, Dr. Nash was going to see if it could be brought in under a special permit as an experimental treatment.

I had been listening to all this with rising dismay, realizing that I had no alternative but to take the same journey myself. My own treatment was scheduled for the end of the month.

CHAPTER 25

They try to have tea with your immune system.

On June 22 I returned to the National Institutes of Health. In the interim, Chris Fisher had also been through the treatment, while most of the others were scheduled after me. His initial reaction to the drug had been as bad as Dave’s—sudden pain, a feeling of pressure and suffocation, and a panicked feeling that he might be dying. But luckily those side effects went away in less than ten minutes. Chris’s body had tolerated the amphotericin better than Dave’s, and he managed to get the full, seven-day course. Even so, he had a rough time. The treatment left him feeling nauseated, exhausted, beaten up, and “totally without ambition.” After he returned to Colorado he got a rash on his body so terrible that the NIH doctors wanted to hospitalize him (he refused). He was sick all summer and unable to work into the fall semester, which caused him professional difficulties with his university department. The leish ulcer then started to come back, and only went away after Chris applied heat treatments to it. Over a year later, Chris’s rash still hadn’t completely healed.

Dave’s and Chris’s experiences were in the forefront of my thoughts as I filled out the usual paperwork at the NIH. My wife, Christine, had come with me, and we were escorted into one of the hospital rooms used for infusions. It was a very pleasant space, although the furniture was bizarrely oversized. I felt like I’d landed in Swift’s imaginary kingdom of Brobdingnag. The nurse explained that the NIH was researching morbid obesity, and we were in one of the rooms specially built for those patients.

I took my seat in the infusion chair, stressed and anxious. Since the infusions took a total of six to eight hours a day for seven days, I had brought a backpack stuffed with twenty pounds of my favorite comfort books, far more than I could ever read—Edgar Allan Poe, Arthur Conan Doyle, Wilkie Collins. I imagined being trapped for hours with a terrifying Nurse Ratched hovering about. But a perverse part of me was also curious about the effects of the drug. What would it be like to believe I was dying? Maybe I’d see the face of God, or the light at the end of the tunnel, or the Flying Spaghetti Monster.