‘93 Lung-Transplant Patient Has Parents to Thank for Gift of Life

During the first weeks of 1993, Stacy Sewell, then 21, was fighting for every breath.

A doctor warned Jim and Barbara Sewell that their daughter was about to lose her lifelong battle against cystic fibrosis and the damage it had done to her lungs.

But one year ago last Saturday, all three members of the Sewell family took part in a risky medical experiment that snatched Stacy back from death’s door. At County-USC Medical Center, a team supervised by Dr. Vaughn Starnes removed parts of Jim’s and Barbara’s lungs and sewed them into Stacy’s chest.

It was the first time two living donors had been used in a lung transplant and the first lung transplant on a cystic fibrosis patient. The operation raised medical ethics questions because it put three lives in jeopardy at once.

Yet today, there are no regrets in the Sewell house, located on a scenic rise in Quartz Hill, just west of Lancaster. On the anniversary of the historic operation, the family popped open a bottle of champagne they’d received a year earlier from a member of the transplant team.

And this afternoon, the family will return to the hospital to join Starnes, other staff members and other transplant families in a first-anniversary celebration.

The Sewells have good reason to celebrate. Although they are sometimes winded by climbing stairs or heavy exertion, Jim, 56, and Barbara, 50--who each gave up one lobe from one lung--say it has not affected their normal routines.

But the most remarkable change is in Stacy. Before the surgery, she was tethered to oxygen around the clock, sometimes too weak to wash her own hair. Today, she plays tennis, works 20 hours a week at a clothing store, attends college, drives her own five-speed green Ford Escort and stays out till 2 a.m. playing gin rummy and poker with friends.

“There’s no comparison, whatsoever,” says Barbara Sewell.

Jim Sewell agrees: “A year ago, she was sick and dying. Today, she is alive and healthy and has a life ahead of her. It is a completely different person.”

Cystic fibrosis, an inherited disorder that affects about 30,000 Americans, causes thick, sticky mucous to build up in the lungs. This leads to chronic lung infections and the destruction of critical air sacs.

Since the Sewells’ operation, Starnes has performed another six successful transplants involving cystic fibrosis patients and their living relatives. But few doctors nationwide have followed suit because the technique is still new and because it poses some risks to the living donors.

The Cystic Fibrosis Foundation in Washington has taken no position on this surgery and refers inquiries to leading physicians in the field.

Previously, lung transplants only involved organs from recently deceased donors. But about 1,200 people nationwide are on the waiting list, and a patient typically must wait more than a year before they receive a transplant, experts say.

Living-donor operations provide another option when a patient cannot wait a year. But transplant experts say they only work when the recipient is smaller than the donors. In these cases, the two small donated lobes provide normal lung capacity for the recipient.

“Because there’s such an organ shortage, and because this can be done, I think more and more programs will cautiously adopt it, particularly if the size is correct,” says Dr. Stanley B. Fiel, a cystic fibrosis specialist at Medical College of Pennsylvania.

“I think it’s something that holds potential for some people,” says Dr. Thomas Egan, a transplant specialist at the University of North Carolina. But he adds, “As much as this is a technical success, it would have been better for the patient and her parents if she had been able to get a conventional (non-living) donor.”

Elbert P. Trulock, medical director of the lung transplant program at Washington University School of Medicine in St. Louis, said his staff has considered living-donor transplants but has not attempted one.

“Right now, in order to carry this operation forward, you must have a patient whose death is imminent and who is not likely to get a lung from a brain-dead donor,” Trulock said. “It is new, and it does subject the donors to some risk. In order to justify that, there has to be a more urgent need.”

No one disputed that Stacy Sewell was days away from death just over a year ago. Even so, her family says, Stacy possessed dogged optimism, a powerful will to live and a knack for beating the odds.

She had confounded her doctors’ prediction that she would die before her first birthday, her mother says. After a difficult childhood, her health improved as a teen-ager. When she graduated from Quartz Hill High in 1990, most of her classmates were unaware of her ailment.

But by late 1992, her health had taken a turn for the worse, forcing her to leave her job and college. By then, Stacy was so weak that her father had to carry her upstairs to her room, piggyback style.

“There was no life for her,” her mother recalls. “She would take a shower, if she could, and sleep all day. Then she would cough all night.”

Today, Stacy, a petite woman with wavy brown hair, says she was most upset about the loss of independence. “I did not like the way my life was,” she explains. “I didn’t like being dependent on so many people, and I didn’t like being housebound--which really drives me nuts!”

But she adds: “I never lost hope. I just figured that tomorrow is another day. Tomorrow, it will be better. It never was, but I kept believing that.”

By January of 1993, Stacy was hospitalized with a dangerously fast heartbeat, caused by her failing lungs. Because of her grave condition, Starnes asked her parents to consider a living transplant.

Because of the risk to the parents, “He told me I should think about it,” Barbara Sewell recalls. “I said, ‘I don’t have to.’ ” Her husband agreed.

Starnes also warned that because Stacy was so weak, she had only a 50-50 chance of surviving the surgery. Her mother now says: “At no point during this did we really think she wouldn’t make it. We never stopped to think that she might die--and we would be too sick to arrange the funeral.”

After the operation, when Stacy was disconnected from a respirator, the sensation was surreal. “I felt like I was breathing with somebody else’s body,” she recalls. “My lungs had never inflated like that before.”

Although Jim Sewell was discharged in 10 days, his wife developed an infection that required additional surgery. She remained in the hospital for five weeks. “I still feel guilty to this day,” Stacy told her mother recently. “What you went through was awful.”

Stacy herself began building up stamina by walking the hospital halls. After five weeks, she too was sent home. The drive along California 14 remains a vivid memory.

“On the car ride home, I saw things on the freeway I had never seen before,” she says. “I appreciated every blade of grass. Maybe I thought I was never going to see that freeway again.”

For three months after the operation, Stacy had to wear a surgical mask in public places to avoid the risk of infection.

By June, the mask was gone, and her father had reassembled the bicycle he feared she might never ride again. After overcoming a few balance problems, Stacy was soon pedaling away.

In August she returned to her job, selling children’s clothing at Mervyn’s in Lancaster. “It is amazing,” says Ed Skvarca, store manager. “She always mustered as much energy as she could, but I could tell after the operation that she was much more vibrant and had more energy.”

When she was hired in 1989, she had sought no special considerations because of her cystic fibrosis.

“She didn’t want anyone to know,” store manager Skvarca says. “She didn’t want to use anything like that as a crutch. I think she has a lot of character.”

Many of her co-workers learned about her condition through news coverage of the historic transplant. They sent cards and banners to cheer her on.

In late summer, Stacy also returned to Antelope Valley College. Her courses have included English, psychology--and tennis.

“During my whole life, I never mentioned that I had cystic fibrosis to anyone,” Stacy explains. “I told them I had asthma. I didn’t want any special attention. I just wanted to be normal.”

Although her lung problems are gone, Stacy still has the disorder and must consume enzymes to help digest her food. She also takes drugs to help prevent rejection of her new lungs.

Because she is a transplant pioneer, medical experts do not know how long her donated lungs will continue to perform properly. But she was pronounced in good health at a checkup performed earlier this week.

Stacy is uncertain about her career plans. But she does know they won’t involve accounting, which gave her trouble in a college class. And she won’t take any job in the medical field.

“I’ve had enough of that, thank you,” she says with a smile.