Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: SUNDAY, January 24, 1993 TAG: 9301240173
SECTION: VIRGINIA PAGE: D1 EDITION: METRO
SOURCE: CAROLYN CLICK STAFF WRITER
DATELINE: LENGTH: Long
WANTED: 2 HEALTHY LUNGS
WHITNEY LEFTWICH is as independent as the next teen-ager. The decisions she is making, though, have to do with saving her life.\ Whitney Leftwich is philosophical about missing many of the rites of teen-age passage. For the diminutive 16-year-old, there are no rowdy basketball games, no dances, no all-day mall-hopping.
Leftwich is a victim of cystic fibrosis, although "victim" may be too strong a word for this self-possessed teen-ager.
Since she was a small child she has faced the fact that her lungs would never have the capacity of other children's.
"When I was in elementary school, I could keep up with the other kids," Leftwich said. "But I could never run."
CF, a hereditary disease caused by an abnormal gene, impedes the body from absorbing nutrients and causes the lungs to fill with a sticky, thick mucus that impairs breathing and eventually leads to lung failure and death.
Because of the disease, she must remain attached to an oxygen tank nearly all the time, its 50 feet of tubing allowing her to roam over the house she shares with her father, Dick Leftwich.
When she does go out for an occasional pizza run with friends, she simply carts a portable tank with her, impervious to the stares of small children.
Leftwich, a Cave Spring High School honor student, can tick off the statistics, the whys and wherefores of the disease. One in every 2,000 live Caucasian births results in a CF baby; the incidence is much lower among blacks, Hispanics, Orientals and Native Americans.
There is no cure, although researchers are hopeful new gene-therapy treatment may signal a breakthrough.
But that won't help Leftwich. Her best chance of survival, doctors say, is a double lung transplant, an operation now performed at 95 medical institutions in the United States.
She remembers clearly the first time she heard about the transplant from her physician, Dr. Andre Muelenaer, the director of pediatric pulmonology at Community Hospital.
"We never knew it was a possibility as a treatment," she said. `My dad said it felt like he had been shot through the eyes."
Although she has insurance, the operation, which can cost as much as $300,000, is expected to leave her family about $75,000 in debt.
Through her grandparents' church, Goodview Baptist in Goodview, nearly $48,000 has been raised from individuals and businesses to help the family. There have been several community fund-raisers that have also added to the coffers.
About $3,500 of that was collected in cans and jars the Rev. Joe Phillips placed in businesses around Moneta and Goodview in Bedford County.
To understand just how cystic fibrosis affects a life, consider Whitney Leftwich's day.
The teen-ager rises early, at 6:30 a.m. She unhooks one I.V. that has pumped in liquid nutrition overnight, and inserts another containing the first medications of her day. A diabetic, she tests her blood-sugar level and administers the first of two daily insulin shots.
Next, she uses an aerosol nebulizer, which pumps a fine mist into her body to help clear her lungs. Then she dons a special vest that vibrates her chest for about 25 minutes, loosening the thick mucus that imperils her lungs.
It is a technological advancement beyond the four-time daily physical therapy that her father, Dick Leftwich, administered until recently, therapy that included repeated pounding on her back to loosen the secretions in her lungs.
With the vest, that physical therapy regimen can now be reduced to only three times a day.
At 7 a.m., she is ready for breakfast and the myriad oral medications that she must take.
At 8 a.m., her teacher arrives to begin the two-hour daily at-home tutoring sessions that ensure she stays on the honor roll.
At 10:30 a.m., she has a snack, a must for Leftwich, who has lost weight in the past year and now hovers at about 100 pounds.
At 11 a.m., she repeats her early morning regimen with the aerosol nebulizer, tests her blood sugar and takes her enzyme medication before her noon lunch.
From lunchtime until 2:15 p.m. she can do what she likes - read, study, figure out her new computer, or play with her cat Pleistocene and her two dogs, Brandy and Spencer.
At 2:15 p.m., she begins another I.V. medication, wears the physical therapy vest and has another snack.
At 5 p.m., it's more nubulizing, more testing of blood-sugar, and her second insulin shot before 6 p.m. dinner.
Between 8-10 p.m., she prepares for bed, a ritual that includes another round of therapy, and hooking up the nutrition I.V. that will pump all night.
"I'm in charge of everything," she said. "I'm in charge of my medicine. Now that I drive, I go to the doctor by myself."
"She knows exactly what she has to take, and when she has to take it," said her mother, Candy Leftwich. "She kind of decided on her own [to handle her medicine]. She wants to be independent. She wants to do for herself all the time."
It wasn't until Leftwich was confronted by a series of lung problems in her sophomore year of high school that she began taking the prospect of a transplant seriously.
Until then, she had learned to deal with the occasional bouts of respiratory problems that would land her in the hospital for days at a time.
"At that point, I still had in my mind that I was going to get better," she said.
She viewed a successful school year as one in which she spent only a handful of days away from the classroom. "My ninth-grade year I had a really good year," she said. "I only missed two days of school."
But as her lungs grew increasingly diseased she could no longer go to school.
During late 1991, she suffered two lung collapses, including one that required surgery.
In March 1992 her lungs started bleeding. The next month, she found out she was diabetic, a disease that sometimes is a consequence of CF, and began taking daily insulin shots.
And over time, she decided that the transplant was her best hope of living to a ripe old age.
"I think I slowly came to this decision," she said. "It was like I didn't have any other choice."
Although they always held out hope for a cure, the family felt the same way, Candy Leftwich said. "Her health has deteriorated so much in the last year and a half."
Although there is no cure for cystic fibrosis, researchers feel more confident than ever that they will soon crack the mystery of the lethal disease.
In December, researchers at the National Institutes of Health got the green light to proceed with gene-therapy experiments that would replace the CF genes with normal genes.
"We are confident with gene therapy and the new pharmacological approaches, we can really provide a cure," said Dr. Robert Beall, executive vice president of the Cystic Fibrosis Foundation, headquartered in Bethesda, Md.
Scientists propose giving patients a nasal application of a common cold virus that contains normal genes. As the virus invades the lung tissue, scientists believe, the new genetic material will displace the defective lung cells. The experiments have been successful in the lung tissue of laboratory rats.
But for people like Leftwich, with an advanced stage of the disease, the double lung transplant remains the best hope of survival.
"For those patients, where we are now, it's the only option," said Beall. But he cautioned, "It's not achieving the quality of life we would want for anybody."
There is still the prospect of rejection and patients must still monitor their health closely.
Bill Cunningham, senior coordinator of the Virginia Organ Procurement Agency, a non-profit organization that coordinates organ recovery, said there are 29,585 people waiting for organ transplants across the United States. Of that number, 978 are waiting for lung transplants and 178 are waiting for heart-lung transplants.
The operation is no longer considered experimental. In 1991, there were 51 heart-lung transplants in the United States and 402 lung transplants.
"I'm not a gambler but I think it's a chance these people should take to see if they can make it," said Cunningham. "You're looking at, over a five-year period, a 60 percent survival rate."
Leftwich is now on the list for a transplant at the University of North Carolina medical school. She knows the wait may be long and the recovery difficult, but the independent teen-ager has long ago given up feeling sorry for herself.
And while she has had the support of her parents and her grandparents, Jimmy and Joyce Lyle, she is the one making the decisions about her future.
"I'm feisty and stubborn," she said. "When I get discouraged, I just think what life I would like."
Contributions may be sent to the Whitney Leftwich Lung Fund, Goodview BaptistChurch, Route 2, Box 191, Goodview, Va. 24095.)