More information on lung transplants

Lung transplants: Who, when and how?
Cystic fibrosis patients often receive lung transplants, but it’s rare for those under 18, said Dr. James Royall, the chief of Pediatric Pulmonology at OU Children’s Physicians.

“By the time you transplant, your lungs are so bad with cystic fibrosis that you can’t really survive,” Royall explained.

Cystic fibrosis is marked by a defective protein that causes fluid buildup in the lungs and pancreas. A transplant offers patients the ability to breathe with lungs unaffected by the disease, Royall said.

The transplant operation normally lasts 6-8 hours and involves connecting many complex tissues, so patients might not choose the surgery due to the high risks involved, he said.

“People that have cystic fibrosis decide whether it’s something they want,” Royall said. “We never tell them they need it.”

Rejection is a common challenge many transplant patients face, Royall said.

Drugs that suppress the immune system combat this problem – but those drugs also increase the patient’s risk of infection while their bodies’ defenses are lowered, Royall said.

Because of these risks and any emergencies that might arise, transplant patients must live near the hospital that provided the transplant for several months before and after the surgery, Royall said.

OU Medical Center doesn’t perform lung transplants, and Integris Baptist Medical Center performs lung transplants only on adults.

Specialized medical centers — like St. Louis Children’s Hospital — are the best option, since they offer optimal care by a focused and highly trained staff, Royall said.

What is Cystic Fibrosis?
Cystic fibrosis, a genetically inherited disease, causes mucus buildup in the body’s organs, specifically in the lungs and pancreas.

Cystic fibrosis patients are children of parents who each carry the defective genetic marker that causes the disease. Even then, the child has only a 25-percent chance of inheriting both parents’ defective genes and having the disease.

About 30,000 Americans have cystic fibrosis, but about one in every 31 Americans carries the cystic fibrosis marker.

The median lifespan for cystic fibrosis patients is 37 years old. Since no cure exists, patients must take enzyme supplements, multivitamins and other medicines daily, in order to lessen the disease’s symptoms.

About 120-150 patients receive lung transplants each year.

Source: Cystic Fibrosis Foundation

Fast Facts
Here are some statistics based on the 1,032 active wait-list patients seeking a lung transplant as of the end of 2006.

About 29 percent – or 298 patients – had been waiting for two years or longer for their transplant.

Cystic fibrosis patients have the second greatest need for lung transplants. Patients with emphysema and chronic obstructive pulmonary disease ranked No. 1.

1,401 lungs were accepted from organ donors who died. Of those, 231 lungs went to cystic fibrosis patients.

There were 4.7 lung transplants for every 1 million Americans.

Source: Scientific Registry of Transplant Recipients, U.S. Health Resources and Services Administration.