Precious Words of Life: ‘We Have a Heart for You’ : His Brother-in-Law Had to Overcome a Morass of Bureaucracy and Red Tape, but He Beat the Odds for a Second Chance

This is how the dead come back to life. It’s 1:30 a.m. on New Year’s Day, when the phone jars you from sleep. A voice on the other end tries to be calm, but the message is stunning:

“Happy New Year. We have a heart for you. Get down here quickly.”

Within hours, Richard Evans, 43, will receive the heart of a 26-year-old Phoenix man who died earlier that night. Weeks later, he’ll be riding a bike and taking long walks, feeling 20 years younger. Once a cardiac cripple with only months to live, he’s suddenly glowing with health.

To outsiders, it’s a perfect Hollywood ending: Man needs heart. Man gets heart. Zoom in on the happy family, pan the desert sunrise and fade to black.

If only life were that simple.

“This transplant won’t guarantee me five years, 10 years or 30 years,” says Richie, my brother-in-law. “It’s just buying me time until doctors find a way to prolong my life with certainty. Until then, these are the cards I’ve been dealt.”

It’s a common story in the United States, where about 2,000 donor hearts become available for transplant each year. With Space-Age technology and delicate precision, doctors at the University of Arizona Health Sciences Center in Tucson have given Richie a miraculous gift--a second shot at life.

But lots of other folks aren’t as lucky. The story of how Richie got his heart raises troubling questions about the 34 million Americans who don’t have health insurance. It also shines light on a little-understood surgical procedure that is rapidly becoming commonplace in some U.S. hospitals.

Nowadays, most folks think of heart transplants as instant wonders. Doctors work their magic and bingo, you’re back in business. We don’t hear about the medical complications that haunt patients, such as diabetes, and kidney and liver failure. We don’t talk about anti-rejection drugs that can trigger bizarre mood swings. Or fears that a new heart might suddenly break down.

“All of this changes you,” Richie says. “And it happens so fast.”

The events are still a blur to me. Last July, I rush to my brother-in-law’s side when he suffers a massive heart attack. His father died of heart failure at 68, and Richie inherited the family’s high and deadly cholesterol counts. He had triple bypass surgery at 28 and his heart has been deteriorating since.

On a dry, windy night, I find him clinging to life in Scottsdale Memorial Hospital with the aid of a heart pump. Doctors later whisk him in a life-support ambulance down to the University Heart Center in Tucson, where the verdict is unanimous: Richie’s only hope is to get a new heart.

But that’s like telling a drowning man to find dry land. Like so many other Americans with a pre-existing condition, Richie has little or no health insurance. There’s no way he can possibly come up with the $60,000 cash down payment the university demands for the intricate surgical procedure.

Wherever he turns, the deck is stacked against him: Richie’s auto collision assessment business has taken a dive. If he tries to get health insurance, carriers who refused to cover him in the past certainly won’t do so now. Meanwhile, he has little hope of getting covered by Arizona’s version of Medicaid. You have to be virtually dirt-poor to qualify.

With neither cash nor coverage, Richie won’t be put on a national list of patients waiting for donated hearts. And without the heart, he’s a dead man. How long can he hold on? Five weeks? Five months? No one knows.

“The money thing hurts more than the fact I need a new heart,” he said bitterly at the time. “I mean, I’ve worked all my life. I’ve paid my taxes. I’m a middle-class man, right? And now I’m the one who takes it in the arm.”

He’s always been an athletic, resilient guy. The kind of weekend linebacker who shrugs off pain and comes back for more. If something bothers him, he clams up. His wife, Marcia, grumbles that he’s the king of denial.

But not now. Richie’s hit rock bottom--and his rebirth has begun.

*

Here’s a health care message for Bill and Hillary: It’s the bureaucracy, stupid. Cut the red tape and you’re halfway home.

In August, his life hanging by a thread, Richie realizes that his only shot is to apply for Medicaid. Social workers have told him that his previous income may disqualify him, but there’s a slim chance he might become eligible for a second federal program known as Supplemental Security Income (SSI).

That’s important, because under Arizona law, patients who qualify for SSI automatically get Medicaid. With that guarantee, Richie could pay for his new heart. As he begins filling out endless forms, it appears he may also be eligible for disability aid from a third program called Social Security Disability Income (SSDI). It seems too good to be true--and it is.

We discover an ominous Catch-22: Under federal law, SSI recipients lose coverage if their monthly income is more than the paltry sum of $434. The government calculates that Richie qualifies for a mandatory disability check of $683 a month, based on years of employment and paying taxes. That’s more than enough to kick him off SSI and Medicaid. Never mind that he’s dying.

Could he simply decline the federal disability check or give back a portion of it? Impossible, say bureaucrats in Phoenix and Washington, D.C.

Back in New York, my wife has been working the phones for her brother, trying to find a way out of this mess. In four weeks, she’s become an expert in disability programs, filling up notebooks with phone numbers and financial calculations. It’s not looking good, but then Richie gets a huge break.

Health care officials in Washington eventually reveal that an obscure program would let him cut his disability check by paying for job training and re-entry skills. Known as PASS--or Program to Achieve Self-Sufficiency--the program allows participants to subtract these costs from monthly disability checks. Thus, by starting an approved rehabilitation plan, they can get under the $434 SSI limit and stay on Medicaid.

Millions of disabled Americans face the same dilemma as Richie, it turns out, yet many don’t know about this financial solution. Indeed, some Arizona health care bureaucrats tell us they’ve never even heard of the PASS program.

Washington officials praise PASS, but they’re also concerned about program abuses in some states. Meanwhile, we wonder: How many lives have been lost?

For Richie, the money hurdle has been cleared. Now the hard part begins.

*

Imagine being so dependent on a beeper that your knees shake when it goes off. That’s how Richie feels after doctors put him on the transplant list. If the beeper sounds, they tell him, there’s a new heart waiting for him.

“The first time it goes off, it’s September,” Richie recalls. “I’m in my car and I hear it ringing. I just can’t believe it. I start to wobble. So then I call the number shown on the beeper--and it’s a wrong number .”

The gods are against him. Doctors tell Richie to stay healthy so he won’t be passed over if a heart is found. He promptly comes down with the flu.

Slowly, however, he creeps up the transplant list. Surgeons rank recipients based on their condition and the hearts that become available. There’s no guarantee that the right one will be found to match a patient’s tissue, blood type and heart size. Some people wait months--even years--in vain.

Richie meets lots of them in October at a support group held by the New Heart Society of Phoenix. It’s an active organization run by and for heart recipients, led by businessmen James Fleming and B.G. (Reb) Proffit. Members offer financial support to transplant families and are raising funds to build a residence for them near the University Heart Center in Tucson.

More important, they try to boost national awareness about organ-donor issues. Each year, more than 30,000 Americans need new hearts, but only 2,000 or so become available, says Dr. Jack G. Copeland, a world-renowned heart transplant surgeon and co-director of the Tucson center.

“This is not a well-understood subject,” he says of organ donation. “Unless you have training in this at the time of a tragedy in your family, you’re liable to react in a way that many people do, and that’s to say: ‘Nothing more is going to happen to this (dead) person. Enough has happened to them already.’ ”

By November, Richie banishes gloomy thoughts and looks forward to the approaching holiday season. Holidays mean drinking, driving and mayhem. He doesn’t wish tragedy on anyone. But if people die in sudden accidents, their organs might save another’s life.

Like clockwork, it happens on Thanksgiving and Christmas for two men in his support group. Now, Richie is No. 1 on the list. He and his wife dine at 5 p.m. on New Year’s Eve, then go to bed early. So does his family in New York.

“I just had this feeling ,” Marcia says. “I knew we’d be called.”

*

When the call finally comes, they don’t give you details. All you know is that someone has died hours before and that your new heart is ready.

Richie and Marcia climb into their car on a cool, refreshing night and calmly drive the 118 miles to Tucson. It turns out the organ is a perfect match, and doctors rush my brother-in-law into transplant surgery several hours later.

At 7:30 a.m. in New York, our phone rings and it’s Marcia, her flat, steady voice fighting off emotion: “We’re in Tucson. It’s happening.”

There’s not much to do except act like zombies. My wife, eight months pregnant, decides we should walk, so we shuffle silently through the streets. Richie’s mother, who is spending the holidays with us, joins the vigil.

As we hold our breath, doctors give my brother-in-law his second life. The operation goes well and although hurdles remain, the situation looks good.

In the next few days, Richie shows us what people go through after transplants: Frustrating pain. More than 60 pills every 24 hours. Fears that his new life will be distorted by powerful anti-rejection drugs and medical complications.

Then, like magic, he’s released after 12 days. Richie begins to feel strength he hasn’t felt in years. He can cross the street without that awful pounding in his chest. Marcia says his eyes are open in a way she has never seen, his face pink from newly circulating oxygen. He can chase a golf ball down a ravine, and when he falls playing tennis, he gets up unscathed.

How long will he live? At the Arizona center, the one-year survival rate is 93%; the five-year rate is 80% and 70% reach 8.5-years, Copeland says. Richie is a good candidate for that and more because of his youth.

In the future, Copeland adds, doctors hope to increase survival with artificial or animal hearts. Meanwhile, quality of life is a key concern.

“You don’t know what pain is until you live without it,” Richie tells me when I visit him. We meet in the busy Phoenix airport terminal, and I’m startled to see that he’s walking faster than I am.

“It’s like I’m back from the dead,” he adds. “It’s amazing.”

So are the personal changes. For much of his life, Richie has been a quiet, private man. But now, he wants to give back some of what was given to him. He’s become a vice president of the New Heart Society and helped organize a golf tournament and charity auction that raised nearly $74,000 this month.

Last July, I gave him a good-luck charm. It was a baseball signed by pitching legend Tom Seaver, and my brother-in-law held onto that horsehide for dear life. Now, as I’m packing up to return home, he saunters over and flips the ball back to me. Like a 20-game winner who’s found the groove again.

“I won’t be needing this anymore,” he explains. “I’m back in control.”

Then he tosses me another ball, this one inscribed to my newborn daughter. The message is for her but applies no less to the man who wrote it.

It’s signed “Uncle Richie” and reads simply: “Welcome to the World.”