Planets Align to Allow Transplant

Planets Align to Allow Transplant

or the past three years, Everett Davis’ struggles with a rare blood disorder had made him a frequent visitor to Hopkins. But, one afternoon last February, his three-hour trek to Baltimore seemed to take twice as long. With his wife behind the wheel, the 32-year-old accountant rode most of the way from his Kingston, Pa., home in total silence, pondering the sudden news that the liver he desperately needed had been found.

Diagnosed at age 17 with paroxysmal nocturnal hemoglobinuria (PNH), Davis had been on a liver transplant waiting list since last December. His condition—affecting only one or two out of every million people—had caused major blood clots to form in several abdominal veins, including in his spleen and intestines. His kidneys, also riddled with blood clots, failed in November, and he was placed on dialysis. But the most serious threat was to his liver, which had been destroyed by multiple clots. To make matters worse, no one wanted to give him a liver transplant.

“Because of his condition, we thought that, after the operation, he would still have clotting problems with his new liver,” says transplant surgeon Andrew Cameron. “It would have been a waste of a precious liver.”

When Davis first arrived at Hopkins in 2004, his condition was manageable, and his suffering was confined to rare episodes of jaundice, abdominal cramps and fatigue. But by April 2006, his complications had escalated, and by October he could no longer work.

His physician, hematologist Robert Brodsky, realized that Davis’ only shot at survival was an experimental drug, Soliris. Unfortunately, though, there was a catch: Soliris hadn’t been approved by the FDA and wouldn’t be until March. Davis had less than a year to live, if that. The drug was his only hope.

Davis’ family and friends began making countless calls to senators and congressmen, hoping someone could help them procure the drug on a compassionate use basis—a practice reserved for terminally ill patients. “I don’t know what happened behind the scenes,” Davis says, “but someone decided to give me the drug, and we’re thankful for that. Otherwise, I don’t think I’d be talking to you today.”

On Nov. 30, Davis received his first dose of Soliris. He had such success that by December he was approved for a transplant and put on the waiting list. Then, on the morning of Feb. 6, Davis got the call from the Hopkins Comprehensive Transplant Center. A liver had just become available, and he was next in line. “I spent most of that morning crying,” Davis recalls. “When you hear those words, a ton of things run through your head. I have a wife and a 20-month-old foster child. Naturally I thought about them.”

He tried to avoid dwelling on the possibility of not making it through the surgery. Without the operation, he knew he was dead anyway. Still, he was scared. He had learned to live with and manage his blood condition. But receiving a new organ was difficult to fathom.

By 9 p.m., Davis was in the operating room, and Cameron, along with fellow transplant surgeons Andrew Singer and Warren Maley, had signed on to conduct the surgery. He was released from the hospital after only nine days and is now stepping down the road to recovery. “He came at the exact right moment when all the planets aligned and the drug was available and we were ready and willing and able to take a chance on a transplant,” Cameron says. “He can live to be 100 years old now. I’d be disappointed and surprised if he didn’t.”

Despite the surgery’s success, the weeks immediately afterwards were trying. Davis’ health had always been unreliable at best, and he kept waiting for something to go wrong. “Finally, Dr. Cameron told me, ‘You’re good. You’re not going to break. Get used to it.’”

By May he was getting ready to head back to his job, and he and his wife were in the process of adopting their foster daughter. “I don’t think the surgery or recovery could have gone any better,” Davis says. “My doctors are amazed. To be honest, I’m a little amazed. It’s basically a miracle. There’s no other way to describe it.”