When Sara Murnaghan was given the opportunity to finally have a lung transplant, everyone knew it would be tough for her. Her parents knew it would be tough for her because although it can buy her a significant amount of time, lung transplants don’t cure Cystic Fibrosis.
According to Dr. Anastassios Koumbourtis, who is the pulmonary chief for Children’s National Medical Center in Washington D.C., lung transplants will hopefully keep patients alive and healthy while hoping that a cure will come along and save their lives.
For Sara, whose parents won the battle to allow her to have an adult lung transplanted and changed the national policy over how children that are younger than 12 get placed on the organ donation waiting list, the recovery time may be long and difficult, and may not ultimately save her life, but friends and family are hopeful.
Not many children actually become sick enough with cystic fibrosis anymore to need lung transplants. According to Dr. Stuart Sweet, who is the chief of pediatric lung transplants for Washington University in St. Lous, treatments for this genetic disease have become so much better over the past ten years that those that have cystic fibrosis often live longer than they used to before they begin to have problems with their lungs.
An estimated 30,000 in the United States are living with cystic fibrosis today. The disease causes a sticky type of mucus to begin to accumulate in the lungs, which can lead to infections and trouble with other organs. It is a life threatening condition. Only about 20 years ago, children that had the disease would oven perish before the end of elementary school, but not the average life expectancy is 37 and getting higher.
In 2007, a study in the New England Journal of Medicine caused serious questions over whether new lungs offered enough longevity to be a benefit when treating cystic fibrosis. Health care providers determined that, for patients that have run out of options, a lung transplant could be immensely beneficial.
According to Dr. Sweet, lungs are extremely difficult to transplant. He says that lung transplantation is not the perfect solution.
While donated lungs are free of the gene that causes cystic fibrosis, and don’t fill with mucus, cystic fibrosis continues to cause damage to the intestines, pancreas and other body parts, which requires more treatments to help treat symptoms and nutritional issues.
One of the biggest problems for cystic fibrosis patients that have had transplants is that some of the germs that are resistant to antibiotics lingering in their sinuses. These germs then travel to the new lungs and immune suppressing drugs that must be taken can cause the new lungs to be infected.
Over time, many of the transplanted lungs fail, and the tiny airways begin to break down; often from infections. Some patients will qualify for a second transplant, but additional transplants aren’t usually successful like the first.