Cystic Fibrosis Patient and Advocate Celebrates Her First Year Following Lung Transplant

According to a story from the Irish Examiner, 31 year old Orla Tinsley is celebrating her first year of life following her life saving double lung transplant operation. This lung transplant was necessary to treat Orla’s cystic fibrosis, a rare lung disorder. This disorder causes progressive worsening of lung function, and when it becomes severe, a transplant is often the only hope for survival.

About Cystic Fibrosis

Cystic fibrosis is a type of genetic disorder which can have impacts throughout the body, but it is most characterized by the build up of abnormally thick, sticky mucus in the lungs. This mucus becomes a fertile breeding ground and habitat for potentially infectious bacteria. Many patients must take antibiotics for much of their lives. This disorder is caused by mutations of the CFTR gene. Symptoms of cystic fibrosis include progressive decline in lung function, lung and sinus infections, coughing up mucus, fatty stool, poor growth, infertility in males, clubbed digits, and digestive problems. Treatment includes antibiotics and medications or procedures intended to maintain lung function. Lung transplant is an option when lung function declines severely. Life expectancy ranges into the 40s and 50s with good care. To learn more about cystic fibrosis, click here.

Raising Awareness About Cystic Fibrosis

Orla, a journalist, has written frequently about the challenges of living with cystic fibrosis, and has become a prominent public advocate for spreading awareness about the disorder. Her dedication to campaigning for cystic fibrosis played a major role in the establishment of unit dedicated to the disease at St. Vincent’s hospital in Dublin.

Her operation took place on December 21st, 2017. Transplants can be risky and complications can be severe. A big part of her role as an advocate was her featuring in a documentary which chronicled her path to receiving the transplant as well as her day to day experiences of living with cystic fibrosis. The documentary followed 14 months of Orla’s life leading up to the transplant, including the six agonizing “false alarm” calls she received in which she was contacted about a possible donor but was then told that the lungs were not suitable.

 


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