Dr. Terry Box's early medical practice was shaped by his formal education. Later, experience became key. These days, his work as a doctor is formed just as much by memory of a holey mattress cover and 20 sleepless nights.
When the liver transplant expert tells a patient he understands what she's feeling, he means it.
Box, medical director of the liver transplant program at LDS Hospital since 1992, had a liver transplant of his own 18 months ago. Wednesday, he shared his experience in a packed presentation at the hospital's education center.
He calls it his "mid-life makeover," starting with the discovery during a long-neglected routine physical examination that although he felt great and was an avid biker, his liver was enlarged. Exactly how big was a shocker reserved for the operating room nearly three years later.
The first concern was cancer and his own mortality. But nail-biting tests later, he was convinced the liver's problem was not cancer-based. He decided to keep his liver problems a secret from most people and get on with his life. Friend and colleague Dr. Legrand Belnap counseled "that thing's got to come out"; he said no. There were sicker people who needed a liver, he reasoned, and the operation's no picnic. He wasn't going to have it done before he absolutely had to.
After a couple of routine follow-up appointments, he drifted, putting off further appointments. It took a bike accident to put him back in patient mode. In the emergency room, where he had various injuries including a broken pelvis and a badly banged head, doctors were distracted by the liver, which was growing again, he said.
The liver is located on the right side of the abdomen, is the largest organ in the body and one of the most complex. It cleans toxins and medications from the blood as well as aids in digestion. Any abnormality can be life-threatening. Box's liver when removed was several times the size of a healthy liver.
He recuperated from his bike accident and resumed riding, but it was clear he was not as well as he'd thought. He couldn't keep up with people he'd easily passed before. He felt like he was running on "two flat tires." Night sweats were drenching two or three pairs of pajamas each night, his feet were swollen, he was exhausted.
It was time to get on the waiting list. At this point, though, his roles were becoming mixed. He was still trying to keep his medical condition private while doing his job — part of which entailed leading the discussions of who would be listed for an organ and who was not a candidate. Issues can include other complicating medical conditions, likelihood of a successful transplant, even history of sub- stance abuse or criminal background. Organs are not plentiful, so decisions about who will get them are made daily.
He recused himself from the discussion. More and more, he said, "I began to put myself in the patient's position." Talking to his own patients, he would project into the future and what things would feel like.
The operation itself was unusual, as was the liver, which was literally gargantuan. It had displaced his other organs. Wrestling it out was a major undertaking. Instead of a single small scar, he has an inverted T where he was cut neck-to-pelvis and hip-to-hip. "I had decidedly underestimated" how big it was," he said, a slide emphasizing his point.
Knowing what to expect, clinically, was a comfort. And a problem. He knew too much.
Most liver recipients are out of the hospital in around a week. Complications held him captive 20 interminable days, where he learned that despite what he called expert and compassionate care, all he wanted was to go home.
"I found being a patient a difficult experience."
There was that hole in the mattress cover that felt like a chasm. He discovered there existed not one chair in the hospital on which he could comfortably sit.
It was a "terrible and wonderful experience," he said. "Perhaps it was terribly wonderful."
Box has changed his own approach to medicine to make it more patient friendly, he said.
And, he figures, he may be "the most blessed person in the room today," humbled and buoyed by the generosity of a family who suffered a grave loss and still gave the liver. He's been nurtured, he said. And delivered.
E-mail: lois@desnews.com