At the Bedside: Living with idiopathic pulmonary fibrosis is not a death sentence in the eyes of Houghton Hutcheson

Last year, Houghton Hutcheson, now 79, started experiencing shortness of breath on a trip to Colorado. When he returned, he scheduled a visit with his primary care physician, Eric Thomas, MD, MPH,  professor in the Department of Internal Medicine and Griff T. Ross Professor in Humanities and Technology in Health Care at McGovern Medical School at UTHealth Houston. Imaging on Hutcheson’s lungs showed scarring, so Thomas suggested he see a pulmonologist.

Just a week later, Hutcheson saw Rodeo Abrencillo, MD, vice chief of research and associate professor in the Division of Pulmonary, Critical Care, and Sleep Medicine atMcGovern Medical School, who diagnosed him with an incurable disease: idiopathic pulmonary fibrosis. 

“When I found out it was pulmonary fibrosis at first, it didn't mean anything to me, because I'd never heard of it before,” Hutcheson said. “He was very direct and very upfront, he didn't mince words, and he didn't sugarcoat anything. He told me that no medication has been found yet that will cure the disease and stop the scarring in my lungs.” 

There is no cause for idiopathic pulmonary fibrosis, but a combination of genetics, lifestyle, and risk factors can lead to scarring. As a former smoker, Hutcheson’s odds of developing scars on his lungs were greater. While there is no treatment to stop or reverse scarring, advanced research has identified a few medications that can slow its progression.

“Early diagnosis is key for treatment of this disease,” said Abrencillo, who also serves as the director of Interstitial Lung Disease Program and the Pulmonary Fibrosis Foundation Clinical Care Network at UTHealth Houston. “From disease onset, diagnosis usually can be between three to five years, and by that time, the scarring is moderate to severely advanced. Within a year, they would need to be on oxygen, and without treatment, the survival is around five years.”

Abrencillo started him on pirfenidone, an antifibrotic and anti-inflammatory medication believed to reduce the production of fibrotic proteins and cytokines that contribute to lung damage. Early diagnosis of scarring on Hutcheson's lungs allows the medication to slow the scarring before too much damage has been done, reducing his symptoms to a minimum and improving not just his life expectancy but a better quality of life, too.

However, with only management and no cure for this deadly disease, Hutcheson is also living in the unknown. 

“I may die of something else before pulmonary fibrosis takes me; there just is no way to know,” Hutcheson said. “I will be 80 next year. My wonderful wife and I will celebrate our 49th anniversary, and I have five grown adult children, seven grandchildren, and three wonderful daughter-in-laws. I have had a nice, full life, and I know where I'm going after this.”

Hutcheson sees Abrencillo every four to six months to measure the progression of scarring on his lungs. Since treatment with pirfenidone, the scarring has not progressed significantly. 

“I am just living my life. We're all gonna die someday, but I'm not just going to wait around for it,” Hutcheson said.

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