Cystic Fibrosis

John Couch, a 38-year-old Yardley, Bucks County, accountant with a badly damaged heart, was at home when the telephone call came late Sunday night telling him to come at once to Johns Hopkins University Hospital in Baltimore. There was a heart waiting for him. For four months, Couch had been preparing himself for a heart transplant operation. But he had no idea his new heart would come from a living patient in a procedure described yesterday as historic. "He assumed it was to be a brain-dead person's heart," Betty Grose, Couch's mother-in-law, said last night.

Samantha Marie Grosse, 22, of Lansdale, a senior at the University of Florida, died Monday at Penn Presbyterian Medical Center in Philadelphia after an 18-year battle with cystic fibrosis. Miss Grosse was at the center for treatment when she was found unconscious overnight in the bathroom inside her room, said her father, Jeffrey C. Grosse. Autopsy results were withheld pending laboratory tests, said Jeff Moran, spokesman for the Philadelphia Medical Examiner's Office. Spokeswoman Kim Guenther said that under hospital policy, any "unexpected death" is handled by the medical examiner.

The state of the future The entire store of human knowledge now doubles every five years. In the 1980s, scientists identified the gene causing cystic fibrosis. It took nine years. Last year, we located the gene that causes Parkinson's disease in only nine days. Within a decade, "gene chips" will offer a road map for prevention of illness throughout a lifetime . . . . A child born in 1998 may well live to see the 22d century . . . . As important as rapid scientific progress is, science must continue to serve humanity, never the other way around.

LATCHKEY KIDS The bad news: A University of Southern California study has found that eighth-grade latchkey kids are twice as likely to engage in substance abuse as their supervised counterparts. The good news: The researchers note that other studies have shown that "more authoritarian parenting styles" may help rein in the children - even when the parents are not home. Parents should tell latchkey kids to call in after school, place limits on their after-school outings, and assign chores and/or monitor homework, the researchers say. NUTRITION FOR ELDERLY If you're an older person, you should maintain a sensible diet.

John Couch, a 38-year-old Yardley, Bucks County, accountant with a badly damaged heart, was at home when the telephone call came late Sunday night telling him to come at once to Johns Hopkins University Hospital in Baltimore. There was a heart waiting for him. For four months, Couch had been preparing himself for heart transplant surgery. But he had no idea his new heart would come from a living patient in a procedure described yesterday as historic. "He assumed it was to be a brain-dead person's heart," Betty Grose, Couch's mother-in-law, said last night.

Phil Wenrich, emergency management coordinator for Chadds Ford Township, is running a race every day. For his life. By all measures, Wenrich has already won. Diagnosed at birth with cystic fibrosis, which usually proves fatal by the time a person is in his or her early 30s, Wenrich, 40, says he is living on "overtime. " "I have claws in the back of my neck that is cystic fibrosis trying to take me over. I talk to my disease every day. I could let it take me out, but I won't let that happen.

It isn't every 5-year-old child who can hear a golf tip from a Professional Golfers' Association tour member such as Hal Sutton and turn it into a perfect 10-foot putt that rolls gently into a practice-green hole at White Manor Country Club. But then again, Folsom's Joey Jenkins isn't any ordinary little boy. Joey is this year's official poster child for the $25,000 McNeil Classic, a PGA tour event to be conducted Monday and Tuesday at White Manor in Malvern. The tournament will be dedicated to Joey and almost 30,000 other children nationwide who have cystic fibrosis.

The Tylenol Kids Classic, which raised $800,000 for cystic fibrosis research in six years and was the only event in the Philadelphia area to feature PGA tour pros, disappeared quietly over the winter. The contract between the golf tournament and its title sponsors, McNeil Consumer Products and Ortho-McNeil Pharmaceutical Corp., had expired after last July's event. Executive director Kevin Scanlon was undecided for some time on whether he wanted to continue the event. "It went from a labor of love to just labor," Scanlon said earlier this week.

Sick: The Life and Death of Bob Flanagan, Supermasochist isn't easy to watch. At times, this powerful documentary is virtually impossible to watch: One scene near the end involves a hammer, a nail, and a part of the performance artist's body that should have nothing to do with a hammer and nail. That said, Sick is also fascinating. Early on in his friend Kirby Dick's film, Flanagan can be seen lying on a table on a stage, a respirator tube up his nose, reciting his own obituary: "Bob Flanagan, artist, masochist, and one of the longest-living survivors of cystic fibrosis, died today," it begins.

The heart and lungs of a Pennsylvania woman who died over the weekend now serve a 20-year-old cystic fibrosis victim from Mississippi whose own heart beats in a Morrisville man. The double "domino transplant" was performed at Temple University Hospital Sunday night and Monday morning by Temple's transplant team. Leslie Lacey, 20, of Kosciusko, Miss., is in critical but stable condition after receiving the transplanted heart and lungs. The high school graduate awoke after surgery and said that "she didn't know how easy it could be to breathe," according to Barbara Narins, clinical coordinator for the transplant program at Temple.