Diagnosed at the age of four with cystic fibrosis, Robert Stavenger knows the importance of clean air.
Cystic fibrosis (CF) is a genetic disease that causes thick mucus to form in the lungs, pancreas and other organs. In the lungs, this mucus blocks airways, causing lung damage and making it difficult to breathe. Air pollution is detrimental to all of us, but for patients with lung diseases, it is particularly harmful due to damaged airways being more susceptible to infection.
Being diagnosed at such a young age, Stavenger recalls how he didn’t know any other way of living. Because of that, he never thought much of his “chores” that included getting aerosol treatments and chest physical therapy twice a day.
“I was relatively healthy as a child,” Stavenger says. “The most challenging thing I remember as a child related to CF was in fourth grade. The class was discussing what we wanted to do when we were older, and I said I wanted to go to college. One friend – a very supportive friend – wondered why I would ‘waste my time,’ because I wouldn’t live much past graduation.”
Life Beyond a Cystic Fibrosis Diagnosis
Although Stavenger says this was devastating to hear, he used it as a source of motivation and decided that he would never let CF make decisions for him. This mindset helped Stavenger not only complete his undergraduate studies, but pushed him to get his PhD and to pursue a career in antibacterial drug discovery.
Unfortunately, during his second year of graduate school, Stavenger fell very ill and needed to be hospitalized.
“It was the night before Christmas break, and I had just finished giving a seminar,” Stavenger says. “I started coughing, and the inside of my chest felt wet. I coughed again, and a mouthful of blood appeared.”
The next morning, Stavenger called his physician and was given oral antibiotics. With little change and more bleeding events, Stavenger was rushed to the emergency room the following day, where he started a course of IV antibiotics and luckily recovered quickly.
However, over the next 15 years his health got progressively worse. Numerous hospital stays and an increase of IV antibiotics were only the start. In 2008, Stavenger became quite sick and was hospitalized for several days. During his stay, he was told that he would need supplemental oxygen 24 hours a day.
Declining Lung Function and the Need for Transplant
For two years, Stavenger continued to live his life as he always had, working full time and even traveling. His lung function continued to decline, though, and Stavenger was getting sick much more frequently. He also struggled with day-to-day activities such as playing with his daughter and his need for oxygen had gone up dramatically. Finally, one Saturday morning, things got even worse for Stavenger.
“I simply couldn’t get out of bed. I didn’t have enough energy to stand up,” Stavenger recalls. “I was taken to a local hospital to be stabilized, and then transported to Penn Medicine’s Medical Intensive Care Unit (MICU).”
While in the MICU, Stavenger’s lungs were “washed” in an attempt to cleanse them. This helped only for a bit, but his health quickly went downhill again. With few options remaining, doctors gave his wife the news: Matching lungs had been identified and surgery would occur the following day.
“I remember waking up and asking my wife if I was too sick for a transplant. Basically, if I still had any hope,” Stavenger recalls. “I had no idea the transplant had already taken place.”
Breathing in Life After Lung Transplant
“It's been over two years post-transplant,” Stavenger says. “It is an incredible feeling to take a deep breath, and know I am able to do so only because of the help of countless people, the support of family and friends, and a difficult sacrifice from a stranger and their family. I am so thankful and still have so much to look forward to in my life.”
It took Stavenger quite a while to get back to where he was prior to the surgery. He exercised a great deal and adopted a healthy lifestyle. While exercise and a healthy lifestyle are important for Stavenger, clean air is at the core of good health.
“Air quality impacts every single person,” says Stavenger. “But it has a much larger impact of individuals that suffer from diseases that affect the lungs.”
Radnor Run Lung Champion
Because of his story and his support of clean air, Stavenger was named the Lung Champion of the 36th Annual Penn Medicine Radnor Run in 2013.
Stavenger encourages people to participate in the annual Radnor Run in an effort to help spread the message about clean air and help the American Lung Association raise money for the prevention of and research into new treatments for lung disease.
The Radnor Run is a five-mile race and one-mile walk/fun run that is held each fall. The money raised helps the American Lung Association provide important programs, including asthma camp, smoking prevention/cessation for teens and adults, and clean air initiatives.