“Today is about living, breathing, and succeeding…we are all in this together.”
Jerry Cahill is a Cystic Fibrosis (CF) Ambassador who was diagnosed with the genetic disease, which is characterized by recurrent lung infections and limits the ability to breathe over time, when he was just 10. At the time he was diagnosed, he says the outlook for living with CF wasn’t great.
“I was in the dark ages of CF,” Cahill told a crowd of participants at The Path Forward in Cystic Fibrosis: Advanced Education for Nurses inaugural event held at Columbia Nursing on October 27. “The life expectancy back then was 16. Ninety-nine percent of the people I knew, aren’t here anymore.”
Today, at 61, Cahill is living, breathing, and thriving thanks to the excellent care he has received from the interdisciplinary CF and lung transplant team, full participation in the complex treatments and a healthy lifestyle that always included exercise. His personal story about living with CF was a part of the one-day event that was organized through a competitive grant from the Boomer Esiason Foundation (BEF) and Johnson & Johnson (J&J) to develop a program to educate nurses about recent advances and challenges in caring for patients with this genetic condition.
“I’ve learned the most important thing in life is to keep on fighting,” Cahill said.
When Cahill was diagnosed as an adolescent, doctors told his parents to keep him at home and comfortable, not then realizing the benefits exercise can have in optimizing lung function in CF patients. While science has come a long way since then, speakers from the conference stressed that there is still much more to be learned about the disease and how to treat it.
“We are all in this together,” said Michael Boyle, MD, Senior Vice President of the Cystic Fibrosis Foundation in his keynote address. “This is much bigger than just the United States. It’s all hands on deck to get these new therapies and to move forward.”
More than 60 nurses from around the world attended the October event. Topics of discussion ranged from clinical management of patients, infection control and prevention, lung transplants, complex treatment adherence, as well as mental health implications for those living with the disease.
“We are working on this now because 20 years from now, we want someone to say ‘I used to have Cystic Fibrosis,’” Dr. Boyle said.
It is estimated that approximately 30,000 Americans are living with CF, while an additional 40,000 are affected world-wide. In addition to building knowledge and skills for registered and advanced practice nurses, the program aims to educate leaders from four Cystic Fibrosis Foundation Centers of Excellence (COE) to implement the same curriculum at their respective institutions.
“The idea is to broaden nurses’ knowledge base and strengthen the expertise and skills necessary to meet new challenges in CF care,” said Judy Honig, DNP, associate dean of academic affairs and dean of students. “We were successful in bringing together nurses from around the world to talk about how to best implement new therapies and how to motivate patients and families to adhere to complex CF treatment regimens. We want to help reduce treatment burden and improve self-management of care; we also want to keep the conversation going.”
In fact, in order to facilitate this, one of the program directors of the conference, Lisa Iannacci-Manasia, PNP, clinical instructor at Columbia Nursing, says a ‘tool kit’ is currently being created from conference presentations for the COE sites, which will include video modules and other resources. Manasia says the hope is to inspire participants to embrace the imperative, to continue to forge the “path forward in cystic fibrosis” and pursue innovation and excellence in providing high levels of care long after the conference has ended.
“This is about joining together and addressing the latest research and advances in best practices for care collaboratively,” she said. “We hope we inspired participants to think critically about the next phase of CF care, and are excited to engage and attend future conferences hosted by our fellow Centers of Excellence thanks to the support of Johnson & Johnson and the Boomer Esiason Foundation.”
As for Cahill, he says years ago when he was hospitalized for complications with CF, it was the nurses who really made life bearable. He says he is happy to travel the country and talk about what it takes to live a full life with CF, and that conferences like The Path Forward in Cystic Fibrosis may be the key to improving the lives of individuals with CF.
“My dream is that there will be a cure for Cystic Fibrosis, so that people don’t have to go through what they go through,” he said.
Click here to view photos from the day.
The four collaborating centers set to build upon this initiative and hold future CF conferences are: Children’s Hospital of Philadelphia, University of Pennsylvania; Boston Children’s Hospital, Harvard University; Cincinnati Children’s Hospital, University of Cincinnati; and Nebraska Regional CF Center, University of Nebraska Medical Center