In the Land of Medical Wizardry : When a Loved One’s Life Could Hinge on a New Heart, His Family Wishes for More Courage, Brains--and Money

TUCSON —  Tragedy has lousy timing.

One minute you’re assembling a wall unit in a New York City apartment, cursing the midsummer heat. The next, you’re racing to catch a plane to Phoenix, where your brother-in-law has suffered a massive heart attack. Only 43, he’s been haunted by cardiac trouble much of his life and had quadruple bypass surgery at 28. He could be dead before you arrive.

“Come quick,” his wife says over the phone, fighting back tears. “Richie’s in trouble.”

Nothing ever prepares you for catastrophic illness in a family. You might know years in advance that someone is sick or dying, and you can brace yourself for bad news in the distant future. But when that day arrives, the shock is overwhelming.

Suddenly, the world of hospital bills, health insurance and medical mumbo-jumbo becomes real. A headache you’ve kept at arm’s length invades your life--and transforms it overnight.

It’s Saturday evening when I step off the plane into 110-degree heat. I’m scared for my family, also embarrassed to admit how little I know about health care. Yet in the next seven days--as Richard Evans fights to survive--I’ll get a crash course in the technical marvels and financial shenanigans of American medicine. I’ll meet bona fide heroes, good Samaritans, irritating bureaucrats and some of the greediest people who walk the planet.

For me, it’ll be an eye-opener. Richie’s education began long ago.

Like a poker player with rotten cards, he was born into a family with a long history of heart problems. His father died of cardiac disease at 68, and Richie inherited the family’s high and deadly cholesterol counts. A native New Yorker, he first experienced chest pains at 25 on a basketball court and had his first heart attack 10 years later in 1985.

Now, he’s had his second. I rush to the Scottsdale hospital where he’s hooked to tubes, wires and beeping monitors, hanging by a thread. His ashen, unshaven face tells the story.

“Your brother-in-law’s a sick man,” one nurse says. “His heart is very weak.”

So are his finances. Like 34 million other Americans, Richie has little or no health insurance. Unable to get full coverage because of a “pre-existing” condition, he’s tried to tough it out, ignoring telltale signs of his failing heart. Meanwhile, his auto collision appraisal business has hit the skids, and his wife, Marcia, hasn’t found good-paying work.

Gravely ill, he doesn’t even have a cardiologist.

“Glad you could make it,” he says weakly from his bed. “How ‘bout them Yankees?”

It’s what I’ve come to expect from my brother-in-law. He’s raised denial to a high art and his tough-guy humor has become a trademark over the years. In the coming days, I learn secrets that he has taken great pains to hide from us; nights he went to emergency rooms, complaining of chest pains, but didn’t want relatives to know.

Doctors warned that his bypass surgery would be good for only 15 years, but he never lived with a sense of danger. Now, faced with a crisis that could kill him at any minute, he’s doing what men always do at tense and awkward moments. He’s talking sports.

Raised in Queens, Richie dreamed of becoming an athlete. And even though his body betrayed him, the street-smart swagger remained. Tonight, I’ve brought him a souvenir he’ll cherish--a baseball signed by New York Mets pitching great Tom Seaver. His face brightens.

“ This is gonna bring me luck,” he says, rubbing the ball. “Gonna need some luck.”

*

A whole bunch of luck, it turns out.

Richie’s condition remains critical and by Sunday morning he’s under the care of a doctor who pulls no punches. Physicians need to know how badly his heart has been damaged, the doctor says. Yet the procedure to find out, an angiogram, could kill him.

Dr. Daniel Storch was supposed to be enjoying a quiet weekend at home with his wife and children, his first time off in six weeks. But that was before my wife in New York got him on the phone. A journalist who tracks down people like a heat-seeking missile, she reached Storch after getting his name from a respected Phoenix cardiologist. She had left an emotional message on his home answering machine: Could he find it in his heart to help her brother, or recommend someone who could?

While my wife works the phones back in New York, her sister, Barbara, has flown out from New Jersey to join Marcia and me for the vigil. We wait nervously for Storch to complete the angiogram, during which a catheter is inserted into Richie’s cardiovascular system to determine how much his arteries are clogged and how badly his heart muscle is damaged.

Afterward, the doctor looks grim.

“I think your husband may need a new heart,” he tells Marcia, showing us films on a video machine. “Three of the arteries into his heart are completely blocked, and the fourth is 99% blocked. Only a small portion of heart muscle seems to be working.”

There’s no time to waste: Storch and other cardiologists agree that Richie should be taken to the University of Arizona Medical Center in Tucson, 120 miles away. They tell us that Dr. Jack G. Copeland and his colleagues have compiled one of the country’s best transplant survival records, making a specialty out of long-shot cases that other hospitals reject.

It seems like the only option. But when my brother-in-law gets the news, he crumbles emotionally. Lying on a bed in intensive care, Richie Evans confronts his own mortality.

“What’s going to happen to me?” he cries. “I can’t live in a bubble or on a machine. They’re going to take my house. They’ll wipe us out. How many years do I have? Five? Six?”

We tell him that financial concerns are meaningless now. He’s got to be strong for the trip to Tucson. He’s got to prepare for the next step. Another bypass operation won’t do any good. He finally settles down, but his initial concerns are right on the money.

*

Indeed, Richie is supposed to be sent to Tucson Monday afternoon. That’s scrubbed when it becomes too late in the day to transport him, doctors say. The move is rescheduled for the next morning, but there’s another delay. When the first phone call comes from the University Heart Center’s financial department, we finally understand.

“What are your financial assets?” an aide asks Richie’s wife. “How much does he make a month? And what about his insurance coverage?”

The questions keep coming, the hours drag by. There are problems with Richie’s health insurance, which doesn’t fully cover a heart transplant procedure, claims one administrator. An insurer that would have paid the cost of a 130-mile or more flight declines coverage, because it’s only 120 miles to Tucson. A noon departure is canceled, then a 4 p.m. deadline passes.

All the while, Richie needs sedation for pain. He’s kept alive by a ballon pump that bypasses his damaged heart, and a nurse watches him around the clock. At 5 p.m., Marcia gets yet another call asking about the value of her house. She explodes with obscenities.

The transfer finally begins at 8:30 p.m. on Tuesday, more than 24 hours after it was medically cleared by the University Heart Center in Tucson. We leave Scottsdale just before the ambulance team, driving through a violent monsoon. Thunder rocks the desert and lightning shoots up and down the highway as rain washes down in sheets. By 10:30, we arrive physically and mentally drained. It seems like just another strange town. But it turns out to be Oz.

The analogy is pointed out by my wife: Marcia needs courage. I’d certainly like more brainpower to battle the bureaucrats. And Richie needs a heart. We’re off to see the wizard.

*

The first thing I notice are his hands. Dr. Jack Copeland, 50, looks the part of a world-class heart surgeon, right down to his long, slender fingers and perfect nails.

He’s performed 370 transplant operations and pioneered dramatic advances in surgical procedure. Under his direction, the Tucson center was the first to use an artificial heart as a bridge to a human transplant. He’s criticized the Food and Drug Administration for its failure to speedily approve the use of artificial hearts, and won greater freedom to do so.

Copeland is called a saint by some and Dirty Harry with a scalpel by others. He’s a busy man, and we’re lucky to get a few minutes of his time on Wednesday.

“I’ve seen young patients like your brother-in-law before,” he says, standing a few feet from Richie’s bed. “But I’ve never seen a patient who had major heart surgery at such a young age. We’ll just have to see how he progresses before making a final decision.”

The decision, of course, is whether Richie gets on the hospital’s transplant list. If he does, the problem becomes one of supply. Heart disease is the nation’s leading killer, and an estimated 35,000 Americans need transplants each year. But only 2,000 organs become available annually, and there are 2,825 people on a national waiting list.

Suddenly, the world looks different. Arizona doesn’t have a motorcycle helmet law, we learn, and as I drive around Tucson, watching bands of bareheaded bikers, they all look like potential donors. Now, I burn with impatience at people who refuse to give up their organs after death, so others might live. I marvel at countries with mandatory donor programs.

On Thursday there are new battles. Although the hospital provides top-flight care for Richie’s preliminary evaluation, the bottom line is clear: If he doesn’t show some ability to pay for an organ transplant--a bill that could top $120,000--my brother-in-law won’t get the heart he needs. The remnants of an $80,000, one-time cardiac policy paid for his care in Scottsdale and the initial costs in Tucson. Now that’s nearly gone.

And so the great money hunt begins. Can Richie qualify for an Arizona program, the local equivalent of Medicare, which would provide almost 100% coverage for his transplant? There’s no guarantee, a transplant coordinator says, and yet it’s his best chance for survival.

Even if he qualifies for some kind of aid, the delays are mind-boggling: He’d have to wait two years for Medicare benefits, and five months for Social Security disability. A third program--Supplemental Security Income--could lead to immediate coverage for a transplant, but it typically requires a three-week wait for an interview, and a month more for a decision.

Stunned by this news, we walk Marcia back to the crowded waiting room and tell her the family will do whatever it can to help financially. We hug her and try to control our emotions.

“There are so many families who come here looking for help, and many of them have trouble raising the money for a transplant,” says Patricia Soto, a social worker with Copeland’s unit. “They come here in a panic, wanting something done immediately. And we have to tell them that it may not be so easy. In some cases, they just won’t be able to raise the money.”

These scenes are played out daily in hospitals across the United States, and that’s the point of this story: Richie Evans is someone I love, but there are millions of patients like him who also need help. In so many ways, their case histories are frighteningly ordinary.

Seven days after I arrive in Arizona, my brother-in-law is still holding on, trying to look on the bright side. Another week later, he’s stable enough to return home, under strict medical guidelines. I don’t know if the wizard will give him a heart, or if there will be enough money to pay for the procedure, but suddenly I realize that I’ve done about all I can for now. The next team of family members has arrived to help, and it’s time for me to go home.

As my plane banks over the Arizona desert and heads back to New York, I keep thinking about a 52-year-old patient we met in Tucson who had received a new heart eight days earlier. He was walking gamely down a long hospital corridor for exercise, looking fit and trim except for the white surgical mask he wore over his face to guard against infection.

“I never felt better,” said David Teague, proudly unbuttoning his shirt to reveal a row of gray staples down his chest, as though they were military medals. He squeezed my arm and offered to speak with Richie if it would help. Then he resumed his trek down the hall: Fifteen times tonight, maybe 20 tomorrow. His new heart beating 115,000 times a day.

“Nobody knows what it’s like to go through this until it hits them,” he said in parting. “And then a lot of it comes down to luck. Just pray that you’re one of the lucky ones.”