Susan Helfgot's husband struggled with heart disease and, when he died, she made the difficult decision to donate his face. It was given to a Vietnam veteran living the life of a recluse while he awaited a transplant. In "The Match," Susan Helfgot writes the heartfelt account of this story.
Read an excerpt below from the book and head to the "GMA" Library to find more good reads.
For a dying man, it is not a difficult decision because he knows he is at the end. If a lion chases you to the bank of a river filled with crocodiles, you will leap into the water, convinced you have a chance to swim to the other side.
–Dr. Christaan Barnard
Monday, April 6, 2009, late morning.
Brigham and Women's Hospital, Boston.
A calculated quiet has fallen over the normally frenetic and noisy cardiac intensive care unit. Nurses stand in groups of two or three, speaking quietly. Others attend to their patients' life-or-death concerns in slow and measured movements out of respect for what has just happened.
Death has come to the floor. Not just any death, although all deaths are tragic in the cardiac surgical ICU, but the death of a patient who has become a fixture here, and for many of the staff, a friend. Joseph Helfgot had battled heart disease for more than a decade, and for the past two years he was cared for by the people who now stand around in stunned silence.
He came so damn close, inching up on the list of patients waiting for a new heart. Only a third of them ever get there, and he was one of the lucky ones. Just two nights ago the New England Organ Bank finally matched the heart from a man who had just died. Word spread quickly. Helfgot was watching late-night TV while his wife slept. The phone woke her up. "Mrs. Helfgot, it's Dr. Lewis. I think we found a heart. Don't rush, take your time, but start putting things together."
"Joseph, we have a heart!"
Ignoring the doctor's advice, they rushed to the hospital, barely taking time to say goodbye to their two boys, who were camped out in the family room, half asleep, ready for bed.
"Bye, Dad. We'll see you after the operation."
At the hospital e-mails flew around the floor. Off-duty staff were copied: Joe's getting a heart! That was Saturday night. Two days later elation has turned to grief.
Earlier that morning.
Dr. Jim Rawn, the surgeon who has orchestrated Helfgot's day-to-day care during his frequent stays in the ICU, steps into the surgical unit. It is barely 6 a.m., but the place is jumping. Two new hearts came in over the weekend, Helfgot's and another one.
Dr. Rawn likes Helfgot, a market research executive who works in the movie business. He knows he has broken a cardinal rule: Don't get too close. But sometimes a heart patient pierces through the cloak of aloofness that intensive care physicians wear like armor. Hollywood Joe, as the nurses call him, is one of them. Rawn has learned the hard way that he shouldn't become too attached. Although the Brigham's cardiac unit is one of the finest in the country, not every transplant patient who comes in here will walk out the door. Better to check your emotions before you come to work, because it hurts too much when you get close.
But sometimes you can't resist, and Joseph Helfgot can shatter the toughest of facades. When he's not knocking on death's door, it's hard to believe he's a patient at all. In the ICU his bed is usually littered with half a dozen movie scripts. Piles of yellow legal pads filled with notes cover the top of his hospital tray, and a second tray on the other side of his bed holds his laptop and his BlackBerry. He has set up shop here. The nurses call it his bedquarters, a term his employees have been using for years. Even before he got sick Helfgot loved to work from bed.
In the hospital he regales anyone who cares to listen, as well as a few who don't, with behind-the-scenes stories about the "real" Hollywood. It isn't uncommon to find a heart specialist with a gaggle of medical students crowding around Helfgot, who is propped up in bed with a movie booming loudly on his laptop. "So I'm watching Public Enemy. You know, Jimmy Cagney plays a gangster? They're doing a kind of remake, with Johnny Depp as John Dillinger. So which do you like better? The scene over here, where Cagney shoots the guy?" The students lean in. "Or this one, where he kisses the girl?" He fast-forwards the movie as they stare blankly at the screen. "Christ, how old are you guys anyway? Do you even know who James Cagney is? How about Jean Harlow? You know, the blonde? Crap, never mind."
Some of the nurses adore him–mostly those he hasn't driven half-crazy with his perpetual list of demands. With a few of them he has the kind of relationship they have with their hairdresser. He can also be exasperating.
"I'm sorry, Judy, but I need this ice-cold, please."
"Mr. Helfgot, we're talking about liquid potassium. It's medicine, not a cocktail. We don't serve it on the rocks."
"Just bring me some ice, please," he says, flashing a petulant smile.
Judy shakes her head. The first time she met him, he asked if she was married.
"No," she said, busily attending to an occluded IV. "Put your arm out and try to hold still, will you?"
"Why not?" he asked, inches from her face as she checked his line, looking for the chink in the tubing.
She stared back at him blankly, thinking, Boy, that's personal. But then she heard herself saying, "Good question. Why the hell am I not married?"
"You'll find somebody," he told her. "You're pretty."
Helfgot's wife was there, and he turned to her and said, "Susan, do we know anyone for her?" To the nurse's embarrassment, which conveniently masked how much she was enjoying this conversation, Joseph and Susan began ticking off names of the single men they knew, and why this one or that one would be suitable or not. A year and a few dates later, some with Helfgot's bachelor friends, Judy was still single.
"I'll get your ice, but you have to drink it all at once, and not over the course of the next two weeks. Your K is so low you're going to crash."
"Okay. I promise."
Dr. Rawn steps quietly into Helfgot's room. This morning, right after the transplant, there aren't any scripts on the bed. Just Helfgot. He hasn't woken up, but it was a long surgery.
"He's not waking up," the nurse says. The nurse is worried, but he's trying not to show it.
Rawn stands over the bed and does his own quick check. He lifts Helfgot's eyelids and examines his pupils, which are dilated. He takes the flashlight from the wall and shines it right into Helfgot's eyes. Nothing happens, no contraction at all. Shit. He calls for a CT scan and the nurse picks up the phone.
An hour later, after the scan, Rawn hovers around the computer screen at the physician's desk outside Helfgot's room, anxiously waiting for the results to upload. He nods at Susan, who has just arrived.
"Not awake yet?" she asks the nurse.
"You know how long it takes for Mr. Helfgot to wake up from surgery."
She does indeed. This is his fourth surgery in a year and a half. Although this is the big one, the one they have long hoped was coming, she is numb from the constant fear of his death. She hasn't had any real sleep in more than a year. This whole medical adventure has been a prolonged road trip through hell.
"Wake up, Joseph!" she shouts in his ear. Sometimes hearing a familiar voice does the trick. She lifts his eyelids and then shakes him a few times. An angry vitals monitor picks up the disturbance and sends out an alarm. Susan reconnects an EKG lead and instinctively pushes the reset button on the monitor high above her head. After a year of bringing her husband in and out of the ICU she knows her way around the machinery, although she also knows that she shouldn't be touching the equipment. She turns to the nurse and says, "You didn't see that."
Dr. Rawn, waiting at the computer, is watching through the glass wall of the room and thinking that Susan would make a great nurse. But why is it taking so damn long for these results? Finally a lateral view of Helfgot's head appears on the screen before him. He stares at it, not wanting to believe what he is seeing. A third of the right side of the brain is in darkened shadow, and some of the left side as well. God damn it! Massive ischemia. The brain architecture is gone. Clots must have traveled up during surgery, closing off the blood supply to Helfgot's head. Rawn spots Greg Couper, Helfgot's heart surgeon, and motions for him to come over. "Greg, take a look." Couper pulls off his glasses and peers at the screen. He tries not to show any expression as his stomach sinks down to his toes. During the surgery he had found a clot in Helfgot's aorta, which was not a good sign. He mentioned it to Susan when they spoke after the operation. He wasn't sure she grasped the significance of the information, but she had been with Helfgot's son, and it wasn't the time or the place to raise fears. He had found clots before; they don't always mean a bad ending, but often they do.
"Have you spoken to his wife?" he asks Rawn.
A few nurses are looking over in their direction with We know something's up expressions.
"The heart is doing well?" Couper asks.
"Banging away." With a respirator still bringing air into Helfgot's lungs, the heart can continue beating.
Stupid! Couper thinks. This whole thing is just too stupid. After all that work to keep him alive. After the artificial heart pump he'd implanted a year and a half ago to keep him going while he waited for a heart, which almost killed the poor guy from so many complications. But Joseph Helfgot was a fighter. He was determined to make it to his son's bar mitzvah, which he talked about all the time. Well, at least he got there. And now, a few months later, he dies getting the transplant? Damn it.
Couper is tired. He performed a second heart transplant only hours after scrubbing out of Helfgot's surgery, and he hasn't been to bed in over twenty-four hours. Transplants are a strange and unpredictable business. Sometimes it's quiet for days on end, and at other times it feels like sheer insanity, with hearts flying in like planes over LaGuardia. And you never know when one of your patients is going to die.
Like right now.
A former college wrestler, Couper had an instinct to hang on, to cling to something to keep his patient off the mat. He stares at the composite X-ray of Helfgot's brain, and the image makes him angry. He wants to pick up the monitor and hurl it through the nearest window.
"Okay," he says, "let's get the heart checked out. Maybe someone else can use it."
"We're doing one more scan just to be sure," Rawn tells him, but he knows the test is pointless. This movie is over.
Couper goes off to check on the other transplant patient who has come up from surgery.
Dr. Rawn prepares himself to walk into the room and inform the widow, who doesn't yet know she's a widow. For a long time he was never sure whether to call her Mrs. Helfgot or Mrs. Whitman. Finally it just became Susan. Now it's Susan the widow.
"So, what's going on?" she asks.
He has always been candid with her. She has a knack for medicine and has been a tireless advocate for her husband.
"He should be awake by now. We did a scan. It doesn't look good."
She suddenly knows that this is the worst moment of her life.
"Dr. Couper found a clot in the aorta during surgery," she says. "He's stroked out, hasn't he?"
"We're doing another scan."
"We just are. There might be something . . ."
They stand there for a moment. "It's okay," she says. "I get it."
He nods, unable to speak.
"So that's that, isn't it?"
He nods again.
"I'm really sorry, Jim," she says as she reaches out and touches his sleeve.
I had thought again and again about how not to fall apart when it finally happened, because I knew it would. The odds were always against us. It soothed me to go off in my mind and practice his death. It made me feel safer, more prepared.
And now Jim Rawn is looking at me, his eyes telling me Joseph is dead. Now there is no inside of me–only outside. All my rehearsing has paid off. The inside will come back. Later.
Just like that, it's over. No more ideas to try, no meds to tweak, no specialists to consult, no waiting for a damn heart. Just like that.
Now there will be crying children, phone calls to make, a casket to buy, plane tickets and food to arrange–all the unrelenting busy-ness that is the sole blessing attached to death.
On another floor of the hospital Esther Charves, a family coordinator with the New England Organ Bank, has just finished a case. On the elevator she recognizes one of the chaplains, a southern woman who has just left the ICU and who knows Helfgot well. Among other topics the chaplain and Helfgot liked to argue about how to make good barbecue. "Joseph," she would admonish him in her thick drawl, "you shouldn't be eating that stuff at all. Too much salt." But most of the time Joseph ate what he wanted.
The chaplain tried to go easy on Helfgot, for although his dietary habits could be abominable, she admired the way he never complained about his bad luck–and he had a lot of it. In her line of work the standard question is "Why has God done this to me?" Helfgot never asked. Maybe he had an answer, or maybe he knew that it didn't help to wonder. She knew patients who just lay there, like inmates on death row, cursing their bad luck. Helfgot wasn't one of them. Sometimes he would get up and stroll around the ICU, trying to cheer everybody up. One day he handed out sushi that Susan had smuggled in.
"Try this urchin. It's amazing."
"Urchin? Um, no thanks."
"No, really, you have to try this. It's unbelievable."
"I'd love to," one patient told him, "but the doctors have put me on an urchin-free diet."
"Esther," the chaplain says, "you may have a case up on six. Heart transplant gone bad."
"How old?" Young people dying are the worst.
"Late fifties, maybe sixty."
Esther gets off on the sixth floor and enters the unit, where a few nurses are crying. She has witnessed this before, but not often. Jim Rawn greets her and fills her in, adding, "You may want the heart too."
A retransplant of a newly transplanted heart? "I've never seen that," she says.
"I haven't either, and I've been here ten years. But we think it's viable, and Dr. Couper wants to take a look."
She glances into Helfgot's room. Close to a dozen people, mostly hospital staffers in scrubs and white coats, surround a small woman Esther can barely see. She must be the widow.
Esther is optimistic. A family that has just received an organ, even if it went badly, will likely reciprocate if they have the chance. She'll come back in a little while, when things are more settled.
Her cell phone rings. It's Chris Curran, the head coordinator at the organ bank. "Are you on the cardiac unit?" he asks her.
"I just got here."
"They say the heart's working fine."
"That's what Jim Rawn just told me."
"We may have a match in the Midwest," says Curran. "Their team is checking it out."
On Saturday, when the organ bank matched Helfgot with a heart, his name was moved from Waiting to Transplanted in the national database. Curran has never met Helfgot, but for years he has watched his name moving up and down the list. It's always satisfying when a patient finally makes it to Transplanted. Now they will have to move him over to Deceased. He looks at the information next to Helfgot's name: type O, age sixty.
"Esther? He could be the one we've been waiting for. We'll check it out on our end."
"Are you sure? The heart's a big enough deal. And I don't remember any of us ever asking for a retransplanted heart. I haven't even met Mrs. Helfgot yet. It's way too soon to go there."
"But do you think it's possible?"
"Chris, I just got here. I'll call you in a little while. I need to walk."
Esther drops the cell phone into her pocket. It's too soon, but her heart is beating faster anyway. They've been on the lookout for quite a while. She peers back into the room. The widow isn't there; she must have left during the phone call. A few doctors are at the patient's bedside. Esther recognizes one of them. He looks upset.
A few days ago the organ bank team thought they had their special donor, but it didn't pan out. This one could work. Helfgot's family might be open to it. Esther walks around the unit, past the room of the other man who was transplanted over the weekend. She pulls out her phone.
"Chris? I'll speak with her about the heart when she comes back–but only if you're sure there is someone who will take it. And if that works out, I'll talk with her about the other thing."
Esther wonders when Mrs. Helfgot will be back. Maybe she'll be the one, the one who will say "Yes, you can have my husband's face."
Copyright 2010 Susan Whitman Helfgot