Teen savors her every breath

Transplant: A Dundalk cystic fibrosis patient who endured four false starts with unsuitable organs is enjoying a healthier life with new lungs.

January 21, 2003|By Diana K. Sugg | Diana K. Sugg,SUN STAFF

Heather Marie Beacham picked up the phone two years ago and heard the words she hoped for and feared most in this world: "We've got some lungs for you."

The Dundalk teen-ager, whose lungs were scarred from cystic fibrosis, was so unnerved that she accidentally hung up the phone and began to shake.

Her mother wrapped her arms around her 15-year-old daughter's tiny frame, holding Heather and crying, "Oh, my God, you're going to do it."

But hours later, at the Johns Hopkins Children's Center, Heather was told what almost every transplant patient is told at some point: The donated organ wasn't suitable.

It meant relief - and heartbreak. Because even though false alarms are part of the transplant process, even though doctors expect them and patients are forewarned, "dry runs" are a devastating ritual in transplant.

Physicians get frustrated and disappointed. Families taste fear, and then doubt. Patients suffer, studies show, getting anxious and depressed. For most, practice just makes the final ordeal harder.

"It got worse. I got more scared," said Heather, who was afraid of being put under anesthesia and having a thick breathing tube down her throat. She grew more nervous with the second false alarm, then the third and the fourth.

Twice, she was completely sedated, only to wake up and learn she hadn't gotten the transplant. At one point, she cried all the way to Hopkins, saying, "I don't want it. I don't want it. I'd rather die."

Just before Christmas, though, Heather finally got lucky. On the fifth try, the lungs were a good match. Last week, the 17-year-old was home, taking her final exam in science. Bruises from needles and IVs still showed on her neck and arms, but her pale blue eyes were clear, and she was breathing on her own. "I don't remember any of it," she said, smiling.

From the age of 6 or 7, Heather started getting infections from the buildup of thick, sticky mucus in her lungs. Cystic fibrosis, a chronic genetic disease, also affects her ability to absorb food.

So the 5-foot-2-inch girl weighs only 80 pounds, even though she has received extra calories through a feeding tube every night for the past three or four years.

And like other CF patients, Heather got sicker as she grew older, needing more hospitalizations and a mechanical vest to pound loose the mucus in her lungs. She spent much of her time tethered to an oxygen tank.

Over time, the infections and bacteria damage the lungs, and most patients will need a transplant by their 20s or 30s to survive. But Heather was doing so poorly that in early 2000, when she was just 15, her physician, Dr. Peter Mogayzel Jr., director of the Hopkins Children's Center cystic fibrosis center, told her and her family they needed to consider putting her on the transplant list.

"I bawled," said Heather.

Balancing act

The decision is a tough one. Doctors must balance the risks of the surgery with the patient's health status: If the patient is too healthy, it's better not to do the surgery, but if the physicians wait too long, the patient could become too sick to endure it. And it might be too late to find a good match.

Plus, because lungs are more susceptible to infection and more likely to be damaged, they're among the most scarce and fragile of organs. They must be transplanted within six hours, compared with 24 to 48 hours for kidneys.

Still, when Heather's relatives gathered around her kitchen table for a family meeting, it didn't take them long to decide to support the transplant. Her grandfather spoke for them all: "Heather is strong. She's a good girl. She deserves a longer life."

But it took Heather a few more weeks, weeks of thinking about dying, before she agreed. She had already been though a lot: Classmates at General John Stricker Middle School called her "tube girl" because of her feeding tube, or "turtle" because her swollen lungs had pulled her shoulders forward, causing a hump.

"I sit in bed crying, wishing I was never born with CF. I would like to feel like a normal person, or be a normal person, because I don't feel like one at all," she wrote in a spiral red binder. "`Why me?' is what I ask sometimes. All I know is that I hope CF will go away when I get this lung transplant."

First disappointment

Her first shot came on April 16, 2001. The donor's lungs turned out to be too damaged to use, a common problem because donor patients are often given lots of fluids to keep blood pressure up. When Mogayzel, 41, went out to face the family, he tried to hide his own disappointment and frustration.

"We're going to get a better set of lungs next time," he told them.

Heather's mother, Cynthia Ross, 35, and the crowd of aunts, grandparents and other relatives were dumbfounded. It hadn't occurred to them that the organs might not work out.

That night, Ross couldn't sleep. "What if it did happen? Do you think she'll be all right?" Ross asked her husband, Terry Colaianni. "Is this the right thing? Is it worth putting her through this?"

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