Obituary: Shana Reif, 32; she chronicled her health battles

Posted: July 11, 2007

Shana Reif, who shared her struggle with cystic fibrosis and double lung transplantation in a series of articles in The Inquirer, died early Wednesday at the Hospital of the University of Pennsylvania.

She was 32 years, 7 months, 28 days old - closing in on the average life expectancy of patients with the inherited disorder.

Mrs. Reif, who lived in Bensalem, would have been thrilled to know that more than three years after she received the "gift of life," she was able to reciprocate. Her kidneys and liver were harvested, with her family's consent.

"We just assumed, since she's been on so many drugs, that she couldn't donate," her mother, Sharon Love, said yesterday.

"When we heard that three people were going to get a call like she once got, I thought, 'This was her gift - the greatest gift you can give.' "

Mrs. Reif was diagnosed soon after birth with the genetic defect that clogs the lungs, pancreas and intestines with sticky secretions.

In 1978, she was the Cystic Fibrosis Poster Child - a 3-year-old cutie who posed with Phillies slugger Mike Schmidt. It was the beginning of a personal crusade to raise public awareness about cystic fibrosis and organ donation.

Besides the seven newspaper articles - an occasional series titled "Out of Breath" in 2003 through 2005 - Mrs. Reif gave speeches, did fund-raising walks, and helped thousands who sought her advice through Web support groups.

"She was just a very inspiring woman," said her younger sister, Desirea Caucci.

Ambitious, self-disciplined, and more than a little stubborn, Shana Simpson managed to complete nursing school at Hahnemann University, work briefly, and marry her high school sweetheart, Kurt Reif, despite increasingly frequent hospitalizations and an ever-more-complex daily medical regimen.

By 2003, however, her lungs were so ravaged by chronic infections that she qualified to join the 4,000 patients with cystic fibrosis, emphysema, and other diseases waiting for lung transplants across the U.S.

The lung-allocation rules did not factor in medical urgency, so she crawled to the top of the waiting list over 10 months, wondering which would come first, death or new lungs.

Not long after her March 5, 2004, double lung transplant, the system was changed. Patients in the most dire need now wait only days or weeks, instead of months or years, and the number who die while waiting has fallen dramatically, said Robert Kotloff, chief of Penn's lung-transplantation program.

"The thing that comes to mind when I think of Shana is that she had tremendous inner strength," Kotloff said. "She got far less out of the transplant than she wanted - and far less than we wished for her - but she just kept moving and plugging on. Many people would have given up. Shana never gave up."

Replacing lungs is inherently riskier than replacing a heart. On top of that, however, Mrs. Reif was among a small minority of lung-transplant patients who suffer a catastrophic, unpredictable postoperative complication called "primary graft failure" - basically, the new lungs at first would not turn on. That she recovered and survived a year was against the odds; surviving more than three years was amazing.

"She's had miracles her whole life," her mother said.

After the transplant, Mrs. Reif reveled in volunteering at her church, babysitting her nephew, seeing her husband get his master's degree in management, and helping her mother do a semi-extreme makeover.

"I lost 55 pounds, so Shana and I were the same size," her mother said. "She got me going back to the gym, taking better care of my skin, wearing youthful clothes."

Still, her disease continually caused life-threatening intestinal problems, and airway blockages related to surgical scarring led to never-ending infections. Her quality of her life steadily decreased, while the strain on her husband and close-knit family increased.

"I'm so used to doctors saying, 'She's not going to make it,' and then a few days later, 'Come and take her home from the hospital,' " Kurt Reif said yesterday. "But she was really growing weary of the fight."

Recently, Mrs. Reif's physicians asked her to consider another double lung transplant. After anguished discussion with her family, she declined.

She died of complications following a procedure to reopen a constricted airway.

"She didn't want anybody to perceive her as a quitter, giving up on her life. And she never regretted the first transplant," her sister said.

Indeed, last year, on the second anniversary of her transplant, Mrs. Reif e-mailed family and friends to exult in the ordinary - the smell of a bouquet sent by a friend, a day of shopping, her two dogs, the latex-glove balloon animal her husband had made during her most recent hospitalization.

"My point is: smell the roses," she concluded the e-mail. "Live to the fullest, never with regrets. We tend to say, 'when I lose XXX lbs' or 'when I finish this,' then I'll be happy. All we are promised is right now. So welcome the sloppy doggie kisses, go out with friends, shop instead of putting that load of laundry away."

Besides her husband, mother and sister, she is survived by her stepfather, David Love, her brother, Jay, a niece, and two nephews.

Update: Services will be held Monday night for Shana Reif, a cystic fibrosis poster child whose medical struggles as an adult were chronicled by The Inquirer.

Mrs. Reif, 32, of Bensalem, died Wednesday at the Hospital of the University of Pennsylvania.

Friends may visit from 6 to 8 p.m. Monday at the First Baptist Church of Bristol, 3610 New Rodgers Rd. (Route 413), Levittown. A funeral service will follow at 8 p.m.

Donations may be sent to the Delaware Valley Chapter of the Cystic Fibrosis Foundation, 2004 Sproul Rd., Suite 208, Broomall 19008.

The series of occasional articles, “Out of Breath,” is posted at

Contact staff writer Marie McCullough at 215-854-2720 or

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