Nurse practitioners raise awareness of Alpha-1
Carla Ladig suffered from shortness of breath, bronchitis and other lung problems for 17 years, but did not know the cause.
Two and a half years ago, her symptoms became so severe that she was admitted to the intensive care unit at Parkview Regional Medical Center in Fort Wayne, IN. The admitting nurse practitioner (NP) asked a slew of questions about her history of bronchitis and pneumonia, as well as any history of skin lesions or other symptoms.
“As I answered these questions, it was like a light bulb went on over her head,” Ladig recalled. “She said, ‘You have the Viking disease, and you need to be tested.’”
Dawn Dunn, the nurse practitioner who was on admissions duty that evening, was referring to Alpha-1, a genetic cause of lung and liver disease.
Ladig’s results showed that she has Alpha-1. Today, she is an AlphaNet coordinator who is grateful for the knowledge of what ailed her all those years, and how to manage it. She is also grateful that Dunn finally gave her a proper diagnosis.
“If she hadn’t gotten the test for me that first night, I would have never gotten it,” said Ladig, who at 41 has 45 percent lung function. “I would still be chronically having bronchitis. And I would probably still be smoking. She definitely stopped me from a rapid decline.”
Nurse practitioners around the country are increasingly raising awareness of Alpha-1, not only with their patients but also with the doctors who work alongside them. In many cases, a nurse practitioner is the first one to accurately read the signs of Alpha-1 in patients, and get them tested.
April Greener, a nurse practitioner in Salt Lake City, Utah who is an Alpha, is among them. Whenever she is treating a patient with shortness of breath, wheezing, chronic cough, recurring chest colds or unexplained liver disease, she makes it a point to get the person tested to rule out Alpha-1.
Greener will raise more awareness of Alpha-1 among other NPs in the Alpha-1 Foundation booth at the American Association of Nurse Practitioners (AANP) 2016 National Conference. The conference will take place June 21–26 in San Antonio, TX. Dunn plans to attend the conference, too.
“I am honored to represent the Alpha-1 Foundation, a cause very near and dear to my heart, at the AANP conference this year,” Greener said. “I am passionate about talking to that one nurse practitioner who in turn talks to that one patient. A correct and early diagnosis could answer many questions, save money, prevent complications, and give peace of mind.”
Greener began taking her condition more seriously after her brother died of Alpha-1 liver disease more than two years ago. Although she never had any symptoms herself, she began working out as a precaution, and since then has lost more than 80 pounds.
Dunn, Greener and other nurse practitioners have master’s degrees, and some NPs even have doctorates. They have also received extensive clinical preparation, and provide primary, acute and specialty healthcare services.
To further help NPs tailor their treatment for Alphas, the Alpha-1 Foundation has partnered with the AANP to offer an accredited online course. The program, “Alpha-1 Antitrypsin Deficiency: A Review for the Nurse Practitioner,” is a presentation by James Stoller, MD, MS (Org. Dev.)
Stoller is a pulmonary specialist and chairman of the Education Institute at the Cleveland Clinic in Ohio. He is also a member of the Alpha-1 Foundation’s Board of Directors and director of the Foundation’s Clinical Resource Center at Cleveland Clinic. Since the course launched in October 2014, nearly 2,500 NPs have accessed the program.
Stoller diagnosed both of Dunn’s adult sons as carriers after one was determined to have unexplained liver disease and the other suffered from wheezing. Following the diagnoses, the whole family was tested.
Her sister’s results were normal, but her children were diagnosed as liver-affected carriers. Dunn’s ex-husband and father were both diagnosed as carriers.
“My sister and I married unrelated men, and they both carried Z (genes)” Dunn said. “That’s part of what made me feel like this is more common. So I thought there’s got to be a lot more of this running around, because it’s too incidental.”
When she first started working in the hospital in 2012, she encountered a great deal of resistance to testing for Alpha-1 in those patients who showed the symptoms. Doctors told her Alpha-1 was so rare that it wasn’t worth pursuing. Gastroenterologists said they had never found a patient with an alpha-1 gene.
The early lack of knowledge about Alpha-1 at Parkview extended to those who treated her sons when they were little, and had no idea what was causing their illnesses, Dunn said.
“For selfish reasons, I wanted my children to be treated the right way when they came into the ER,” she said. “That’s why I’ve been doing this, because of them.”
Source: Alpha-1 Foundation
