Katja spent the first 43 years of her life struggling to manage her compromised lung function without a definitive diagnosis. Born with a meconium aspiration, her pulmonologists could not determine how that may have caused her severe lung disease. “They couldn’t understand what causes such advanced lung disease but, in the absence of another answer, they decided to treat me for non-cystic fibrosis, bronchiectasis,” she said.
But these treatments offered little relief and the lung disease continued to progress. Then in September 2018, Katja received a double lung transplant and for the first time could breathe easy.
Soon after, however, her 9-year-old son, Gregory, who had had some of his own respiratory problems, took a turn for the worse. Gregory had previously been treated for allergies and asthma, and was initially diagnosed with pneumonia, but he did not respond to treatment. Abnormal PFTs and unusual findings on a CT scan were concerning. After learning of Katja’s history, Dr. Sadreameli, Gregory’s doctor, initially believed that both Katja and Gregory suffered from an immune disorder, but further testing suggested this may not be the case.
“I knew that what we were dealing with something that was extremely rare — a lung disease that had not yet been fully documented in the literature,” Dr. Sadreameli explained. She formed a research team to further delve into the problem.
Air Quality and Lung Disease
Growing up in California in the 80s, the bad air quality meant Katja struggled to breathe on a normal basis. “At that time there were not a lot of EPA regulations, so car and building emissions were worse. Plus, secondhand smoke in common areas was not unusual, so my quality of life was greatly affected,” Katja said. In addition, wildfires also commonly affect air quality for anyone living in California. Katja’s family moved to Maryland when she was a teenager, but her lungs continued to deteriorate, and she became more vulnerable to air quality changes.
The summer after she graduated high school, though her lung disease had advanced, Katja decided she wanted to find a place to volunteer and was drawn to the American Lung Association because of her history with lung disease and desire to help others. Since air quality had affected her for years, she decided to focus on that topic. She continues to be involved in advocacy efforts specifically to educate people about lung disease and air quality.
“I have watched great changes in my life, and sometimes I think, in 50 years if something doesn’t change people could need to walk around with oxygen because the air quality is so poor. It sounds bizarre but it’s not really that far off,” Katja continued. “People who already have a lung disease can demonstrate to the rest of the world how vulnerable we all can be to environmental changes.”
Unfortunately, being exposed to poor air quality and her worsening condition has forced Katja to retire early in hopes of slowing down her disease’s progression. “I have had asthma attacks, I have to use my inhaler and nebulizer more, I get headaches and my lungs even burn,” she said. “I subscribe to air quality alerts on my phone, but I’m afraid that one day I won’t be able to go outside at all. People with lung disease know how hard air exchange can be and how it is so much harder to do things when there is poor air quality.”
Working for Change
In her lifetime, Katja has seen many advancements in lung health. “When I was young, people with cystic fibrosis rarely lived past the age of 15, and now thanks to advancements in science, it is not a death sentence,” she said. Specifically, for her and her son’s condition, Dr. Sadreameli is looking into how a platelet-derived growth factor receptor alpha (PDGFRA) gene mutation may be linked to lung disease. New advancements like this have Katja optimistic about the future. “My hope is that they are going to find some kind of therapy or targeted treatment to help not only my son, but maybe my grandchildren or anyone else who may have similar symptoms but right now have no answers,” Katja said.
Learn more about the lung disease research we are doing on our website.
Blog last updated: July 12, 2024
