Carmen Armstrong's life has been spun up in a cocoon of waiting from which she may never emerge.
She is waiting to have one of her diseased lungs replaced with a healthy one. But before that can happen, she must wait for someone with compatible lungs to be declared brain dead and for that person's family to donate them.
In the meantime, she lies in her Glen Burnie apartment, in a hospital-style bed surrounded by oxygen equipment. She waits there for help with the simplest tasks, and waits to catch her breath after sitting up or swinging her legs off the bed.
And in her darker moments, she waits as her condition worsens, fearful it will get so bad that doctors may decide she would not survive the lung surgery.
She wants to live. "I have a lot to live for," she says. "I think I have a lot to give."
Mrs. Armstrong is 55, a divorced mother of two grown children. She is one of more than 400 people in Maryland now waiting for a life-saving organ transplant.
She asked to talk publicly about her situation to help people understand what it's like to wait for life-and-death decisions -- her life and her death -- that she cannot control.
She wants people and families who have not considered organ donation to discuss it, and to make their wishes known. And for those facing the unwelcome and difficult decision of whether to donate the organs of someone they have loved and lost, she offers this thought:
"It's so hard to donate." But if the tables were turned, she asks, "would you be willing to accept?"
Mrs. Armstrong suffers from pulmonary fibrosis, a progressive scarring and thickening of the delicate lung tissues that admit oxygen to the blood. Her doctors don't know how she got it. She believes it may be linked to the polio she suffered as a child. It has left her desperate for air.
"I always had a respiratory weakness," she said. But she managed to live a fairly normal, if nomadic life as the wife of an Air Force master sergeant for 22 years. She worked and saved, and raised two children.
But in the past three years, her condition has deteriorated. Her body has weakened and her world has narrowed.
Last fall, when she was placed on a waiting list for a new lung, doctors at Johns Hopkins Hospital gave her 12 to 18 months to live. But the survival of people awaiting lung transplants is "very difficult to predict," said Dr. R. Scott Stuart, director of the hospital's lung transplant program.
What is certain is that without a transplant, "just sitting and breathing will become more of a demand than the lungs can keep up with," Dr. Stuart said. The final weeks before these patients' hearts give out are filled with the kind of panic underwater swimmers feel briefly just before breaking the surface for air.
"I don't think any of us can get a handle on how these people suffer," he said.
Mrs. Armstrong moved last year from Florida to be close to Hopkins' lung transplant program, ready to react quickly if a lung became available. As her condition worsened, she became confined to her bed, tethered to oxygen tanks 24 hours a day.
Now, as she talks with a visitor, she pauses, puffing between sentences, sometimes between words. She seems perpetually out of breath. Her doctor says she has barely 25 percent of her normal lung function.
Beside her bed, two machines hum and gurgle as they pump humidified oxygen through plastic tubes. One tube leads to a surgical opening in the front of her neck, and from there directly to her lungs. The second connects to a mask, which she lifts to her face when the first isn't enough.
At one point, after she moves to adjust her position, a monitor sounds an alarm. A sensor on her finger has signaled that her blood oxygen level has fallen to dangerous levels.
This is not an appeal for money, although Mrs. Armstrong's personal finances are precarious.
The Air Force has agreed to cover the $250,000 to $300,000 cost of the operation. Her "maintenance" costs -- the oxygen, the nursing assistants, registered nurses and physical therapists who look in on her each day -- are paid by her military-sponsored medical insurance.
Beyond that, she receives part of her ex-husband's pension, and benefits from years of dedicated savings.
Hers is more an appeal for understanding, and the compassion of potential donors. For all her waiting would be unnecessary if there were enough donated organs to go around.
The competition for scarce organs is so intense that, for a time earlier this year, Mrs. Armstrong was dropped from the waiting list for a new lung because her brother-in-law decided to remarry after the death of his wife -- Mrs. Armstrong's sister.
Mrs. Armstrong had chosen to enter Hopkins' transplant program in part because her sister lived in Glen Burnie, and could provide her with both a place to live and family support during her illness and, she hoped, her recovery from transplant surgery.
But after her sister died, and her brother-in-law decided to
remarry, Mrs. Armstrong said, the transplant team at Hopkins re-evaluated the situation and decided "I needed a more stable home environment."
Sharon Augustine, transplant coordinator at Hopkins, explained that after surgery "things don't always go 100 percent," and the physical and emotional demands can be enormous.
So Mrs. Armstrong moved into her own apartment. Members of her church wrote to Hopkins to pledge their support. Then her daughter, Lisa, 19, gave up a full college scholarship and moved from Florida to help.
"That young woman has been very impressive," said Dr. Stuart. "Lisa . . . has gone from a regular teen-ager to really take on a lot of sacrifices. She has been a real help to her mom and cheered her incredibly."
Lisa's arrival was enough to get Mrs. Armstrong back on the regional transplant list last month.
But while she was off the list, she read about a successful single-lung transplant at University of Maryland Medical Center -- the first in Maryland. Emphysema patient Gordon West, 51, of Princess Anne received the lung and has since returned to work and to the golf links.
"Please believe me, I'm so happy for him," Mrs. Armstrong said. "But all I could think about was that had I not been taken off that list, I might have been able to get that lung. I didn't have a chance to vie for it."
Now she is back on the list, still waiting. "I'm hanging by a string," she said, but she remains hopeful. "God has always helped me. Maybe someone who reads this will be the one whose loved one can let me live."
If she survives, she hopes to become an advocate for transplant candidates. "If I die, don't be sad for me, because I had my chance," she said. "I just want other people to have the chance I had."