The Pulmonary Fibrosis Foundation (PFF), a nonprofit whose mission is to speed the development of treatments and a cure for pulmonary fibrosis (PF), recently outlined an explanation of post-COVID interstitial lung disease (ILD), as illustrated by one man’s journey with the debilitating condition.*

‘Couldn’t talk, eat, walk, or…breathe’

One morning in 2020, Houston police officer Hito Bazan awoke to a whole new reality. After spending several months in the hospital for severe COVID-19 and double pneumonia, he was shocked to find he could no longer “talk, eat, walk, or most importantly, breathe.”

Said Bazan, “There weren’t a lot of answers in the beginning. I’ve come a long way since then, and we know a lot more about post-COVID ILD than we did nearly three years ago.”

Post-Covid ILD: What Is It?

Having PF and ILD means that scar tissue has built up inside your lungs. This can gradually prevent oxygen from reaching the bloodstream. Low oxygen and stiff scar tissue can lead to shortness of breath, especially during activity.

According to the PFF, symptoms of post-COVID ILD may be similar to other kinds of ILD. Common ILD symptoms include:

• Breathlessness,
• Chronic, dry cough, and
• Fatigue.

Cough and shortness of breath are common to many conditions, however, says PFF Senior Medical Advisor Amy Hajari Case, so experiencing them after COVID-19 doesn’t always point to ILD.

People with post-COVID ILD can also concurrently experience other Long COVID symptoms, like rapid heartbeat, chest pains, and brain fog. 

What causes post-COVID ILD?

Risk factors for post-COVID-ILD vary. Bazan was at greater risk for PF and ILD because of the lung inflammation he experienced as a result of COVID-related pneumonia. Risk is also higher in people who require mechanical ventilation for acute respiratory distress syndrome (ARDS). For many, the lungs will heal over time; for others, ARDS causes permanent damage.

It’s still unclear how milder COVID-19 causes ILD and PF. Studies are underway to determine whether post-COVID ILD is:

• COVID-related inflammation that dissipates over time,
• Fibrosis that remains stable, but doesn’t improve, or
• A disease that progresses over time.

Determining post-COVID ILD

In people who have had pneumonia from COVID-19, post-COVID ILD is typically diagnosed using:

• Chest imaging (X-ray or computerized tomography)
• High-resolution computed tomography (for greater lung image detail)
• Blood work and pulmonary function testing 

If a diagnosis can’t be made from these tests, a lung biopsy may be needed. 

Treating post-COVID ILD

There are currently no treatment guidelines for post-COVID ILD. The condition may be monitored without any treatment, or steroid medications may be prescribed to reduce inflammation in the lungs. 

Clinical trials involving the antifibrotic drugs pirfenidone (Esbriet®) and nintedanib (OFEV®) for post-COVID ILD are underway.

Case says that, although the prognosis for post-COVID ILD is uncertain, most survivors of severe COVID gradually improve or remain stable, though they may have ongoing breathing issues if they develop PF.

For more information, you can explore the PFF’s post-COVID ILD fact sheet, along with its educational and support resources regarding:

• Pulmonary rehabilitation
• Supplemental oxygen
• Disease management 
• PFF Clinical Trial Finder 
• PFF Care Center Network (to find peer support)

Living with ILD

As for Bazan, “What helps the most is talking to people who have gone through similar struggles and can show you what is possible on this journey.” He’s had to make some lifestyle changes but has been able to exercise, work around the house, and spend time with family having the right medical care, resources, and an oxygen machine. 

“It was a long road getting back to where I am now,” he says. “I used to be very focused on work, but now I’m driven to beat this disease, and I’m not going to stop living. I’ve learned that life does not end—it just takes some adjustments.”

*Pulmonary FIbrosis Foundation. (2023, April 28). Post-COVID Interstitial Lung Disease: What you Need to Know [Press release]. https://www.pulmonaryfibrosis.org/about-us/news-and-media/news/article/2023/04/28/post-covid-interstitial-lung-disease-what-you-need-to-know