t’s a moment Broadway actress Julie Halston will never forget. Her husband, veteran radio newscaster Ralph Howard, had been dealing with a nagging cough and shortness of breath. When he suddenly could not climb the subway stairs, Howard thought he was having a heart attack. He was rushed to the hospital where tests showed the problem was actually in his lungs.
“The doctor said, ‘You have a terrible disease called pulmonary fibrosis, and it’s fatal’,” explains Halston. She calls the two-block walk to their home after receiving the grim news the longest of their lives. “There were no words. I felt like we were just punched in the stomach.”
A chance to survive
The couple was told Howard’s only hope was undergoing a lung transplant. The transplant took place in 2010 after a long and tense wait.
“Ralph got his lung on our 18th wedding anniversary, and it was a miracle gift,” explains Halston, an organ donation advocate. “His life returned to normal. He went back to work, no longer had to carry an oxygen tank around, and was free to travel the world. In the last year, we have been struggling with some side effects like diabetes and neuropathy, but we’re still so grateful.”
Becoming an activist
Unfortunately, the couple’s close friend, theatre critic Michael Kuchwara, had been quietly battling idiopathic pulmonary fibrosis at the same time as Howard. He ultimately lost his fight.
“We were devastated by Michael’s passing, and decided to put on a memorial for him and invited some of his favorite performers to appear at Birdland Jazz Club. We asked people to donate to the cause and thought maybe we should do this each year.”
With help from Liza Minnelli, Linda Lavin and other stars, Broadway Belts for PFF! has become a wildly successful annual benefit for the Pulmonary Fibrosis Foundation.
“We’d never heard of PFF, but one of Ralph’s doctors said it was important to get all the information you can about the disease,” says Halston.
Proper diagnosis
Pulmonary Fibrosis Foundation Chief Medical Officer Gregory Cosgrove, M.D. says receiving an accurate diagnosis is crucial.
“Experience in evaluating patients with pulmonary fibrosis and the availability of comprehensive resources to support their needs during their diagnostic journey is important. Centers with experience in treating patients appear to not only offer resources above and beyond treating their lung disease, but offer support in other ways that impact the quality and perhaps duration of their lives.
“One of the biggest challenges is a lack of awareness or understanding about the disease, not only in the patient, but also friends and family, and very often the physician. This leads to a significant amount of anxiety and confusion about what their immediate and long-term future may hold.”
“Being diagnosed with a rare disease can be isolating,” Dr. Cosgrove says. “Support groups allow patients and their caregivers to share their experiences and understand that many other patients have been in their shoes.
The resources we offer, such as the PFF Patient Communication Center, website, disease webinars and Pulmonary Fibrosis Information Guide, serve to support our community and improve their lives. We aim to connect resources, both local and national, to assist patients and their families.”
Each year, 50,000 new cases of pulmonary fibrosis are diagnosed, and 40,0000 people lose their lives to the disease. Cosgrove says that though there’s no cure yet, there’s hope for patients who are struggling.
“Today, we imagine a world without pulmonary fibrosis. Until that time, we’ll do everything we can to help those living with it.”