Caring for Someone with Interstitial Lung Disease | Part 1

Dry cough, shortness of breath, and mobility issues –– these telltale signs indicate interstitial lung disease, a group of respiratory disorders that often go misdiagnosed. Unfortunately, the damage caused by interstitial lung disease is permanent. That’s why it’s essential to seek treatment if you or a loved one develops symptoms.

In part one of this two-part series, we take a closer look at interstitial lung disease. Part one discusses the different types, symptoms, and potential treatment options. While part two discusses tips and tricks for caregivers, products and supplies to make your job easier, and resources for education and support. Let’s get started!

Interstitial lung disease refers to several conditions that affect the interstitium, a group of tissues in the lungs that support the alveoli, tiny balloon-shaped air sacs. Over time, changes to the interstitium affect lung function, resulting in weight loss, a chronic dry cough, and shortness of breath.

There are several types of interstitial lung disease (ILD). Some are acute and respond to conservative treatments, like prescription medication and healthy lifestyle changes, while others are chronic and require long-term care.

Some of the most common types of interstitial lung disease include:

Hypersensitivity pneumonitis: A type of ILD that occurs when you breathe dust, mold, or other irritants into your lungs. 

• Sarcoidosis:  An inflammatory disease that causes swelling in the lungs and lymph nodes.

• Asbestosis:  A type of ILD that occurs due to long-term asbestos exposure, a toxic chemical used in certain building materials.

• Desquamative interstitial pneumonitis: A type of ILD that occurs due to smoking.

• Nonspecific interstitial pneumonitis: A type of ILD that’s common in people with autoimmune diseases, like rheumatoid arthritis and scleroderma.

• Idiopathic pulmonary fibrosis:  A type of ILD that causes unexplained scar tissue to form in the interstitium.

• Cryptogenic organizing pneumonia: A type of ILD that causes pneumonia-like symptoms.

• Acute interstitial pneumonitis:  A severe type of ILD that occurs suddenly. Often, people with this condition need a ventilator.

ILDs affect people of all ages, races, and genders, but several factors may increase your risk, including:

• Smoking

• Having gastroesophageal reflux disease (GERD)

• Undergoing radiation treatment for cancer

• Having an autoimmune disease, like rheumatoid arthritis or lupus

• Having a family history of ILD

You’re also more likely to experience interstitial lung disease if your job exposes you to certain irritants, like asbestos, coal dust, silica dust, or talc. These microscopic particles can be breathed in, causing permanent damage to your lungs.

If you suspect that your care recipient has interstitial lung disease, it’s important to make an appointment with their primary care provider right away. That’s especially true if they experience weight loss or a dry, persistent cough that doesn’t produce mucus.

The sooner your loved one receives a diagnosis, the sooner they can take steps to relieve uncomfortable symptoms and reduce the risk of additional respiratory damage.

Diagnosing interstitial lung disease can be challenging. There’s no easy way to see damage to the lung interstitium. As a result, physicians typically order several different tests, including chest X-rays, computed tomography (CT) scans, and lung function tests.

Your care recipient might also need a lung biopsy. During a lung biopsy, a doctor uses a tool called an endoscope to collect a small piece of lung tissue. Then, they analyze the tissue under a microscope to determine the type of interstitial lung disease. After making a diagnosis, it’s easier to determine the best type of treatment.

Treatment for interstitial lung disease depends on several factors, including the type, underlying cause, and severity of symptoms. Your care recipient might benefit from:

Antibiotics. Antibiotics help fight bacterial infections. If your loved one develops interstitial pneumonia, antibiotics can stop the harmful bacteria from spreading, making it easier to breathe.

Corticosteroids. If your care recipient has an ILD characterized by inflammation, they might benefit from corticosteroids. Corticosteroids ease swelling and relax the muscles around the lungs.

Supplemental oxygen. Many people with interstitial lung disease need supplemental oxygen. Oxygen can increase your care recipient’s mobility, improve their quality of life, and reduce uncomfortable side effects like shortness of breath and fatigue.

Prescription drugs. There are a variety of prescription drugs designed to treat certain types of interstitial lung disease. Some of the most well-known medicines include Cytoxan, Ofev, and Esbriet.

At first, it may take some trial and error to determine the type of medication that’s best for your care recipient. To reduce the risk of potentially serious side effects, it’s important to attend all of their regularly scheduled checkups.

We hope you found part 1 in our series on interstitial lung disease helpful. Click here to check out Part 2, where we discuss tips and tricks for caregivers, products to make your job easier, and resources for education and support.

Read Part Two: Caring for Someone with Interstitial Lung Disease | Part 2