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What Should I Expect If ILD Progresses?

Interstitial lung disease (ILD) can cause scarring of the lungs (commonly called pulmonary fibrosis), which may get worse over time in some people. You may hear this referred to as chronic ILD with worsening fibrosis. The symptoms of chronic ILD with worsening fibrosis are not always noticeable or bothersome until the disease has already progressed. As lung fibrosis continues to progress, most people with chronic ILD experience a gradual worsening of lung function. But the rate of progression of fibrosis in chronic ILD varies a great deal from one person to another. Unlike many other chronic conditions, there are no "stages" of chronic ILD with worsening fibrosis. Everyone experiences it differently.

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You may be more familiar with the term “pulmonary fibrosis” than chronic ILD with worsening fibrosis because some medical specialists use the term pulmonary fibrosis when referring to scarring of the lungs.

Learn more about progression and why early detection is important.

About Breathlessness

Most people who have chronic ILD with worsening fibrosis experience shortness of breath, which healthcare providers call “dyspnea” (“DIS-knee-ah”). Some people ignore occasional breathing troubles, believing it’s just a sign of being out of shape or some minor condition. However, as fibrosis associated with chronic ILD progresses, the damage to the lungs grows more severe, and breathlessness becomes more common. It may occur with minor physical activity—such as getting dressed—or while at rest. With advanced disease, something as simple as brushing your teeth may even lead to breathlessness.

What Are Exacerbations?

People with chronic ILD with worsening fibrosis may experience complications that may cause an increase in symptoms and a decline in lung function over a short period of time. These complications may also lead to an appearance of new lung damage on an HRCT image. When this happens, it is known as an “acute exacerbation” (“ex-zas-sir-BAY-shun”) of ILD. Exacerbations in ILD may be caused by unknown factors or triggered by an infection or aspiration, but more research is needed to identify their causes.

What Can Happen During an Exacerbation?

  • You may feel your breathing become worse within a short period of time (within 30 days)
  • You may experience a worsening cough
  • You may develop fever or flu-like symptoms
  • You may have trouble breathing on your own, increasing the need for supplemental oxygen

Be sure to call your healthcare provider if you experience the symptoms of an acute exacerbation.

Acute exacerbations of ILD are a very serious concern because they can lead to a rapid decline in lung function. More than just “having a bad day,” an exacerbation can lead to hospitalization. It may ultimately lessen your independence and prevent you from continuing to take part in certain activities.

Who Gets Exacerbations?

It’s important to note that not all people who have chronic ILD will experience acute exacerbations, and the cause is unknown. However, people with IPF (a common type of ILD) are more likely to experience an acute exacerbation than people with other types of ILD.

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