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Lung patients find mobile home away from home

  • August 9, 2004
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At a tidy asphalt RV park in a slow part of the city near downtown, Della Copeland pointed out visitors by name, lot number and medical history.

"Well, let''s see," she said inside the office. "Mrs. Johnson in 18, she got her new lung about two weeks ago. Mr. Hill, he got his about two months ago. They''re over there in No. 24. He''s doing beautifully."

For nearly two decades, the St. Louis RV Park has accommodated travelers, sightseers, folks just wanting to get away for a while. Over the years, though, another type of customer has regularly claimed a few of the park''s 100 spots.

At least 22 patients approved for lung transplants at Barnes-Jewish Hospital, the busiest lung transplant facility in the world, have chosen to stay at the park while waiting for new organs and recovering from surgery.

The park is cheaper than most furnished city apartments. The small, gated community is tight-knit, quiet and prone to spontaneous barbecues. Transplant patients stay here to be 10 minutes from the hospital. They make a temporary home for the months they''re here.

"Look how homey it is," said Virgie Hill, 62, sitting outside her second-hand RV. "We''ve got our plants, our rug, our chairs. And we had to have a home here for our cat."

Virgie Hill''s husband, Flavius Hill, 63, had a double lung transplant May 4. They''ve been here since February.

"We were going to rent an apartment, but we found this place and decided it would work better," Virgie Hill said. "The apartment was just so impersonal."

The RV park has all the perks. Clean showers. A laundry room. A sun deck overlooking a small swimming pool.

Copeland, a "full-timer" living here, works a few shifts a week in trade for her hookup.

"It''s just more affordable for them," Copeland said of the patients. "And if you''re an RVer, you want to stay in your RV."

Lung transplant patients are usually the only ones who have to move to be near a transplant center, said Kathy Holleman, a Barnes-Jewish Hospital spokeswoman. Most Americans live close enough to drive to a heart, liver or kidney transplant center, she said.

"The park has full amenities, and they''re just great to patients," said Rebecca Bathon, clinical social worker for the hospital''s lung transplant program. "They really keep an eye on people."

This unplanned association between a world-renowned medical facility and a $400-a-month RV park, though, might be short-lived. Owners of the St. Louis RV Park want to do some RVing of their own. They''re looking for a buyer, and there''s no guarantee the place will remain an RV park.

That''s sad news for Nancy Johnson. After all, she was living here when she met Louie.

Nancy Johnson, 68, got chained to an oxygen tank eight years ago after she was diagnosed with chronic obstructive pulmonary disease. Doctors told her a lung transplant was the only way off the tank.

So from her home in Waukomis, Okla., she and her daughter started looking online to research lung transplants. They saw stories about Barnes-Jewish.

Since the hospital began performing lung transplants in 1988, doctors there have performed nearly 800 of them, making it the most active lung transplant center in the world.

So in 1999, Nancy Johnson and her husband, Owen "Cotton" Johnson, 72, came to St. Louis to see if she was eligible for a transplant. She was, and the hospital put her on a waiting list.

She waited as long as she could. Her health worsened, though, so the Johnsons packed up their fifth-wheel camper - what they call their "fishing wagon" - and moved to the RV park in June to wait for a lung.

Transplant patients have to live here so they''re close to the hospital. When a lung becomes available, a patient has to get to the hospital fast.

During the wait, the Johnsons'' kids and grandchildren brought their RVs up for a visit at the end of June. They were going to leave on the last day of the month, but Nancy Johnson persuaded them to stay a little longer.

"It was so fantastic the way it happened," she said. "The good Lord was looking out for me and my whole family. Be sure to put that in your story."

At 1:04 a.m., July 1, Nancy Johnson got a telephone call. She was in surgery a few hours later. Immediately after the surgery, Johnson named her lung. She calls him "Louie."

During three tours of duty in Vietnam, Flavius Hill worked on a flight deck, inhaling one airplane''s fumes after another. By 1980, he had emphysema, bullous emphysema and the start of a long string of collapsed lungs. Seven years later, he had to go on an oxygen tank.

After 24 operations, 600 hospital days and his eighth collapsed lung, his doctors said any more damage would kill him. He needed a double lung transplant.

After an initial exam in St. Louis, the Hills went back to Duncan, Okla., and saw an RV for sale on the side of the road. The hospital had mentioned the St. Louis RV Park. They bought the camper, fixed it up and moved here Feb. 24.

"First time we had ever been in one," Flavius Hill said.

"They taught us everything about it," Virgie Hill said of her park neighbors'' help. "We knew nothing. Nothing."

During a physical therapy session at the hospital on May 4, doctors came into the hospital lobby and told Flavius Hill they had his new lungs. He went into surgery that day. While her husband was in the hospital for 10 days, Virgie Hill''s neighbors kept watch.

"They made sure I got home safely," she said. "They checked up on me, made sure I was accounted for."

Since Flavius Hill''s release, he has gone to the hospital every weekday for checkups. Lung transplant patients have to do that for at least three months to make sure the body is adapting to the new organs.

Last weekend, though, the hospital let the Hills go back to Oklahoma to get a truck so they could haul their RV home. They hope to leave Aug. 4.

While on the trip, they made a detour to Texas to return Flavius Hill''s oxygen equipment.

"That was a good day," he said.

Lois and Jack Abernathy, co-owners of the park, put up "For Sale" signs on the park fence in June.

"I''m an old man," the "70ish" Jack Abernathy said, only half-joking. "I''m ready to retire."

Lung transplant patients who have to come back to St. Louis for checkups every year worry that a sentimental landmark might be lost.

"This is the best place in town," said Nancy Johnson, who hopes to go home in October. "The people are wonderful here. The people who own it brought us cupcakes when we got out of the hospital."

The Hills have met six transplant patients who have come back to the park for their annual checkups. They keep in touch. This is the place, after all, where at least 22 people started a new life.

And it''s the "RV moments" that they''ll remember most. Like the one last month when, inside his fifth-wheel camper, Marvin Gough tuned a fiddle he had made from scratch.

"That''s good enough for the girls I go with," he said after getting the strings to sound almost right.

Gough''s trailer turned into an unexpected Friday night RV jam session. Owen Johnson took a seat next to a window so he could keep an occasional eye on his wife.

Frank Seamster, 57, of Atlanta, heard the fiddle playing. After a swim in the pool, he wore just a towel over his trunks and a gold chain around his neck. He came inside anyway, grabbed a Gibson guitar and joined in.

After a few three-chord standards, Seamster led everyone in a bluesy version of "Amazing Grace."

Owen Johnson sang along good and loud. He tapped his hands and feet and smiled wide. And between verses, he looked out the window toward his trailer, his wife and Louie the Lung.

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