Double lung transplant means new life for young woman with cystic fibrosis

Shannon Harris’ parents tried their best to give her a normal life, but her childhood was far from routine. Harris was diagnosed with cystic fibrosis at age 2, and she spent good chunks of time battling the chronic disease from a hospital bed.

Cystic fibrosis, a genetic illness, causes a thick build-up of mucus in the lungs, pancreas, and other parts of the body, which impairs breathing and fosters infection. Harris, a 23-year-old Twin Cities resident, often developed virulent lung infections, sinus troubles, or cystic fibrosis–induced digestive problems that prevented her from eating. Harris was admitted to the hospital several times a year throughout elementary and high school. One of four children, Harris says that her family didn’t let cystic fibrosis hold them back. “My parents never let cystic fibrosis limit me from doing what I wanted,” she said.

So that meant hanging out with friends, playing traveling basketball—until eighth grade, when Harris couldn’t run anymore—switching to volleyball, and then golf. She graduated from high school and started college at the University of St. Thomas.

But as Harris grew older, her cystic fibrosis progressed and began taking over her days. Several times a day, Harris donned a unique, vibrating vest designed to loosen mucus from the lungs so it can be cleared by coughing or huffing. Between vest sessions, regular nebulizer treatments and staying on top of her nutrition, which sometimes included gastric tube feeding, Harris didn’t have time or energy for much else. By her early 20s, she was mostly homebound or in the hospital.

Her physician, M Health Fairview Pulmonologist Joanne Billings, MD, MPH, who sees patients at the M Health Fairview Minnesota Cystic Fibrosis Center, suggested that Harris pursue a double-lung transplant. Billings is also an associate professor with the University of Minnesota Medical School.

Harris considered this option for several months—and then decided to have the transplant evaluation.

A complete 180

By fall 2013, her health was declining rapidly. Hospitalized yet again in spring 2014, Harris decided it was time to get on the transplant list. Two months later, she received her new lungs.

Though the surgery went well, Harris required a second operation to remove a blood clot behind her lungs and spent six weeks at M Health Fairview University of Minnesota Medical Center. She was finally ready to start her new life with cystic fibrosis–free lungs. And what a difference these lungs have made for her. Harris no longer has to spend hours each day giving herself vest and nebulizer treatments. And she can do so many things most people take for granted—wash her own hair, drive, work, take long walks, travel, and go out with friends.

“From 21 to 22, I was home sick all the time. There were times I wished I had a different life,” said Harris. “Then I had the lung transplant, and it’s a whole 180.”

Harris no longer has cystic fibrosis in her lungs. But she still contends with the disease in her digestive system and sinuses. She also traded many CF issues for concerns and anti-rejection medications related to the transplant.

“It was a difficult decision for Shannon to pursue the transplant, but I absolutely think it was the right time for her. She was so brave,” said Billings. “I rarely see her now that she’s been transplanted. She looks great, and it’s great to see her leaving the house and living like a normal young woman.”

A special ‘thank-you’

In gratitude for the lifetime of excellent care Harris has received at the U, her family and friends in 2006 started the Shannon Open, an annual golf tournament and silent auction that has raised about $330,000 total for the M Health Fairview Minnesota Cystic Fibrosis Center and the Cystic Fibrosis Foundation.

This past year, Harris’ family donated an additional $25,000 to the CF Center as a way to say “thank you” for her successful transplant and care.

These gifts have gone a long way at the CF Center, helping support an education day for teens and young adults, Billings says. This year, the donations also paid for staff education.

Harris is grateful for the medical treatment she received and for the enduring relationships she has with her team of doctors, nurses, respiratory therapists, social workers, and others.

“The care team and patients become a family, you’re there so much. They care about you, and you’re so close to the people there,” says Harris. “It feels good to give back.”