Interstitial Lung Diseases Living With

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If you have an ILD, it is important to continue your treatment plan. Talk to your healthcare provider about how often you need check-ups and how to monitor your condition.

Without treatment, ILDs may cause the following complications:

• Collapsed lung (pneumothorax)
• Frequent lung infections
• High blood pressure in your lungs (pulmonary hypertension) caused by scar tissue in the lungs’ arteries
• In children, problems growing
• Lung cancer
• Respiratory failure
• Right-sided heart failure, which is often a result of pulmonary hypertension
• Venous thromboembolism, including deep vein thrombosis and pulmonary embolism

Following your treatment plan can help prevent these problems. Talk to your doctor if your symptoms change or get worse.

Your doctor may ask you to take the following steps to help avoid complications:

• Avoid substances in your environment that can make your ILD worse.
• Get routine follow-up care. You may need repeated lung tests to see whether your lung damage is getting worse. Tell your doctor if your symptoms get worse or if you get new symptoms.
• Get routine vaccines. Pneumococcal, flu (influenza), and COVID-19 vaccines can help prevent lung infections that can lead to more lung damage.
• Make healthy lifestyle changes. If you smoke, find support to help you quit. Smoking raises your risk of serious lung damage and lung cancer.
• Get medical care for other health conditions that can make your lung damage worse.

If you have serious trouble breathing, call 9-1-1 immediately.

If you have an ILD, you may worry about your lung damage and symptoms getting worse. You may also feel depressed and have trouble adjusting to your new lifestyle changes, such as using oxygen therapy.

There are a number of ways to take care of your mental health.

• Talk about how you feel with your healthcare provider. Talking to a professional counselor or joining a patient support group also can help.
• Let your loved ones know how you feel and what they can do to help you. Support from family and friends can help lower your stress and anxiety.
• Get treatment for depression. If you’re depressed, you may need medicines or other treatments that can improve your quality of life.

Serious ILDs can lead to life-threatening complications. Palliative and hospice care may help people who have ILDs have a better quality of life with fewer symptoms. End-of-life care may also reduce the amount of time spent in the hospital.