- The Washington Times - Thursday, November 23, 2000

The real meaning of Thanksgiving Day sometimes gets lost in the hullabaloo of parades, food and football. But that's not the case today for Anita Long and her family.
Her family is celebrating the holiday by giving thanks for Mrs. Long, who received someone else's lungs in a transplant operation two weeks ago, and by expressing their gratitude to the anonymous donor's family who passed on the gift of life in the midst of their own pain.
That other family's selfless sacrifice, Mrs. Long says, deeply touched her and the members of her own family.
Speaking from a hospital bed at Johns Hopkins Hospital, the 46-year-old wife and mother of three from Odenton, Md., says she wants the lung donor's family to know how much the gift means to her.
"I don't know who they are," Mrs. Long says, her shoulders beginning to shake as she tears up and puts her hands over her eyes. "In their time of grief, they gave me and my family hope. In their time of grief I'm sorry for your burden, but you have given me and my family a new life."
Mrs. Long had sarcoidosis, an inflammatory disease most often affecting the lungs. Though fairly common, it is rarely fatal and usually can be treated with medication. In Mrs. Long's case, though, the inflammation caused serious scarring of her lungs, leaving them nearly useless.
About three years ago, Mrs. Long began carrying an oxygen tank. About six months ago, she had to quit her job and began to use a wheelchair to get around. Her diet was mostly liquids because eating solid foods made her short of breath. Even talking left her winded.
Dr. Jonathan B. Orens, associate professor of medicine and medical director of the lung transplant program at Johns Hopkins Hospital, says Mrs. Long probably had less than a year to live without a transplant.
To get one, Mrs. Long had to be one of the lucky ones.
Unlike other organs, lungs are offered based on how long someone who needs a transplant has been on the waiting list. The longer you're on the list, the better your chances. But the harsh reality is many patients do not make it. There simply are not enough organs to go around.
Joel Newman, a spokesman for the United Network for Organ Sharing, says 885 lung transplants were performed nationwide last year 33 in Maryland. But 587 of those on the waiting list died before getting a transplant.
More than 3,500 people across the nation await lung transplants.
Lung transplants are rarer than other organ transplants, partly because incidents or accidents that produce donors often also damage the lungs.
Lungs are "the new kid on the block" when it comes to solid organ transplants, Dr. Orens says. They have been successful for only a little more than 15 years.
Dr. Orens says fewer than 50 percent of those who are evaluated are considered good risks for a transplant. Candidates have to be younger than 65 and must pass a psychiatric evaluation to show they can handle the stress of the operation. They also must have a record of keeping appointments, as an indication they'll follow through with the rigorous post-operation regimen including the frequent follow-up visits and heavy daily doses of drugs.
Nationwide, 30 percent of those who have a lung transplant die in the first year, 55 percent within five years primarily from infections or the body's rejection of the organ.
The team at Johns Hopkins, Dr. Orens says, has a significantly higher success rate
But the numbers still can seem grim, and Mrs. Long and her family knew the odds going in.
"So much of this stuff comes at you, and it's usually not good," says one of her 10 siblings, Carole Wilhelm, who lives in Springfield, Va.
But the family, and the doctors, say there's not much choice.
"Once you've had a lung transplant, you can never say you're in the clear," Dr. Orens says. "But the alternative is death. We only offer lung transplants to patients who we believe would be dead within two years."
Mrs. Long got the call Halloween evening: A set of lungs had become available. Get to Johns Hopkins.
She'd gotten a similar call the week before. She'd driven over, gone through the tests. But she was just on standby for that set. The lungs went to another woman.
Mrs. Long says she wasn't ready for those lungs anyway.
"I was disappointed, but I was glad to hear she got it, because she had been [on standby] three different times," Mrs. Long says.
This time, though, Mrs. Long was told she was the primary recipient.
She was put under at about 11 p.m.
At a quarter to 1, the doctors came out and told her husband, William, her sister Mrs. Wilhelm and her brother Jim Lieb that they were going to open her up. They said the lungs would arrive about an hour later.
"That's when you worry what if it doesn't get here?" Mr. Lieb says.
"What if the helicopter crashes?" Mrs. Wilhelm adds.
Three minutes before 2 a.m., the family heard a helicopter landing outside the hospital.
Then they saw a man in a flight suit coming down the corridor, pushing a cart loaded with an ice chest marked as an organ carrier.
Mrs. Wilhelm couldn't contain herself, telling the man the lungs were for her sister.
"She's getting a good pair," he told her.
Four hours later, the doctors wheeled Mrs. Long out of the operating room.
"Stop, there's the family," one of the surgeons said.
They paused long enough for Mr. Long, Mr. Lieb and Mrs. Wilhelm to look.
The one thing they noticed was that even after five hours of grueling surgery, Mrs. Long's face had more color than in the days leading up to surgery her breathing already was helping her.
Transplants are confidential. The donor's family name isn't revealed, though recipients can request that the transplant service in this case the Transplant Resource Center of Maryland pass a letter on to the donor's family.
Mrs. Long's family probably will do that. But they wanted to say a more public "thank you."
Mrs. Wilhelm says the family has some clues about the donor.
They think the lungs came from a Washington hospital. Mrs. Long got her call Halloween evening lungs don't last long at all, so they know a time frame, too.
The point, the family says, is there's another family out there suffering a loss this Thanksgiving. But by letting the transplant go through, they gave Mrs. Long a new chance. And her family wants the donor's family to know the lungs are inside someone who needed them desperately.
"Those lungs breathe in the chest of a really good person," Mrs. Wilhelm says.
Mrs. Long says she can feel the lungs working inside her. They are bigger than those she was born with, and she can tell that they expand and contract better.
"I got myself a whole new beginning. New lungs, new time for my family, my kids. I can do what I want to do," Mrs. Long says.
She had gone home already, but returned to the hospital for an operation indirectly linked to the transplant. She expects to go home again tomorrow.
The doctors say that eventually she won't have any physical restrictions on her activities.
Mrs. Wilhelm recalls finding her sister strolling on a rooftop in the hospital complex last Monday less than two weeks after getting her new lungs.
She was pulling her walker along behind her, dutifully keeping it with her as the doctors had ordered even though she didn't need it.
"I don't know why I have to lug this walker around," she told her sister. "This gets heavy after a while."
To become an organ donor, call the Coalition for Donation at 800/ 355-SHARE.

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