Monday, September 8, 2003

New lung is only potential cure


Senior at Dixie Heights: Tries to live a normal teen life

By Stephenie Steitzer
The Cincinnati Enquirer

[img]
Andrea Hall, 17 of Crescent Springs, who has been diagnosed with pulmonary fibrosis, works out on a step machine in the pulmonary rehab center at St. Elizabeth Medical Center South in Edgewood, Kentucky.
(Gary Landers photo)
| ZOOM |
Andrea Hall doesn't have much in common with the handful of people she works out with three days a week.

Hall is 17, black, and needs a lung so much that she has to be hooked to oxygen tanks most of the time. The others who exercise at St. Elizabeth Medical Center's pulmonary rehab center in Edgewood are at least 50, white, and recovering from heart and lung conditions.

Hall has a life-threatening disease, found mostly in adults, called pulmonary fibrosis.

"She's very insightful and mature and has handled this severe illness with the character that many of my adult patients aren't able to show," said Dr. Lisa Young, Hall's primary physician at Cincinnati Children's Hospital Medical Center.

U.S. transplant waiting list by age:
AgeAll organsLung
All ages82,0003,891
<1 year1161
1-5 years59917
6-10 years42436
11-17 years1,030137
18-34 years9,816617
35-49 years25,6091,074
50-64 years35,0021,834
65+9,628176
--Source: The Organ Procurement and Transplantation Network
Hall learned in February that she has the disease. It results in scarring of the lungs, which can build up to the point where they cannot provide oxygen to the rest of the body.

Pulmonary fibrosis has no cure and a lung transplant is the only effective treatment. The cause is unknown, but is thought to be from an autoimmune disorder, a viral infection or a genetic predisposition. About 200,000 people in the United States suffer from the disease and about 40,000 die from it every year.

As the disease progresses, simple activities like walking and talking become difficult - which is the case for Hall. A faint wheeze can be heard when she talks, and Young has ordered her to use an oxygen tank when she walks, even if it's just up the stairs.

Young said Hall's lungs are working at 30 percent capacity.

Even so, Hall tries to live like other teens.

The oxygen tank is the most obvious sign she isn't a normal girl - and that is a bone of contention with her.

"I hate the looks," she said, still wearing her Burger King uniform after a recent afternoon shift. "They just stare. If they have questions they should ask, not whisper."

When her mother, 39-year-old Rhoda Gross, suggested she explain her disease to curious onlookers, she replied: "I don't have to explain myself to anybody."

Mom is a worrier, constantly reminding the Dixie Heights High School senior to use her oxygen and get plenty of rest.

Hall's best friend, Jessica Godsey, 17, of Fort Mitchell, wants Hall to fly to Hawaii with her in November to visit Godsey's father. Mom is worried about Hall getting enough oxygen on the plane.

So at one of Hall's recent pulmonary rehab sessions, Godsey, who sometimes goes to the hospital with her friend for support, made Gross sign a contract written on scrap paper that says Hall can go if her doctors say it's OK.

"I'm just a worry-wart," Gross said. "I worry more than she does."

Young said it's important for Hall to do things like work part-time and go to the mall with friends.

"I've tried to encourage Andrea to maintain as much of a normal life as she can," she said.

Inside the family's Crescent Springs townhouse, family photos adorn a dining room wall, but a large green oxygen tank stands in a corner. A shelf displays her older brother Roderick's sports trophies - and 10 pill bottles.

Life hasn't always revolved around oxygen tanks and rehab sessions for Hall. She seemed relatively healthy until last year, when she began losing weight and frequently felt short of breath.

"I went crazy," said Gross, who first thought her daughter was taking drugs or was anorexic.

Finally in January, Hall became so sick she was admitted to Children's Hospital, where she was tested for everything, from AIDS to tuberculosis.

When a CT scan showed Hall had pulmonary fibrosis, everyone in her family had a different reaction.

"First I thought it was a joke," Hall said. "My brother says he wished it was him."

Of her sister, 15-year-old Cyslie, Hall said: "She don't really talk about it."

Gross said she cries every day or every other day now.

"I cry all the time," she said. "You'd rather take the fall than them."

Gross quit her job at a nursing home to take care of Hall full time - a decision that has left the family strapped for cash. Now the family relies on Gross' husband and Hall's stepfather, Arnold Gross, a craftsman at Art Woodworking & Manufacturing Co. in Cincinnati.

Hall is on Medicaid, but it doesn't cover some of the brand-name drugs she has to take.

And it won't pick up the half-million-dollar lung transplant - Hall's only hope for long-term survival.

"I get bills all the time," Gross said. "I just look at them."

Dixie Heights High School principal Kim Banta said she hopes to work with some of Hall's teachers to plan a fund-raiser for the transplant.

"I know Andrea very well," Banta said. "She's a terrific kid."

The transplant will take place in Louisville, but not anytime soon. Hall is still being tested to make sure her body would accept a lung, which has to come from a cadaver. That is a fact that doesn't sit well with Hall.

"Now I'm waiting for somebody to die so I can live," she said. "That's sad."

Dr. Young said it could take anywhere from six months to two years for Hall to receive a lung. If she receives a transplant, life will still be medically complicated.

She won't be able to bear children because of the drugs she will have to take. And, she will never be able to drink alcohol.

"But that's stupid anyway," she said.

Regardless, Hall is planning for her future. She wants to study psychology at the University of Louisville.

"She goes out there and tries to get it for herself," Gross said. "She's a fighter. She doesn't give up."

---

E-mail ssteitzer@enquirer.com




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