Pulmonary Fibrosis

WHAT YOU SHOULD KNOW:

Pulmonary fibrosis is also called interstitial pulmonary fibrosis, interstitial lung disease, or ILD. Pulmonary fibrosis occurs when the lungs have been damaged and become swollen and fibrotic (scarred). Some common and some rare diseases can cause pulmonary fibrosis, but in most cases, the cause is not known. Shortness of breath is the main symptom of pulmonary fibrosis. It occurs during exercise or even when resting when the disease gets worse.

Pulmonary fibrosis is diagnosed by blood tests, chest x-ray, bronchoscopy, CT scan, or lung biopsy. Treatment may include oxygen, medicine and surgery and may help you continue with your normal daily activities. Ask your caregiver for more information about these tests and treatment.

INSTRUCTIONS:

Take your medicine as directed.

Call your primary healthcare provider if you think your medicine is not helping or if you have side effects. Tell him if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.

Ask for information about where and when to go for follow-up visits:

For continuing care, treatments, or home services, ask for more information.

Vaccines:

To prevent influenza (flu), all adults should get the influenza vaccine. They should get it every year as soon as it becomes available. The pneumococcal vaccine is given to adults aged 65 years or older to prevent pneumococcal disease, such as pneumonia. People aged 19 to 64 years at high risk for pneumococcal disease also should get the pneumococcal vaccine. It may need to be repeated 5 years later.

Respiratory care:

• Breathing exercises: You may feel short of breath when you are active. The following are breathing exercises that may help you breathe more easily:
  
  
  • Breathe out with pursed or puckered lips (like playing the trumpet).
    
    
  • Breathe using your diaphragm. Put one hand on your abdomen and breathe in, causing your hand to move outward or upward. Your lungs will have more room to get bigger and to take in more air.
  
  
• Oxygen: You may need extra oxygen to help you breathe easier. It may be given through a plastic mask over your mouth and nose. It may be given through a nasal cannula, or prongs, instead of a mask. A nasal cannula is a pair of short, thin tubes that rest just inside your nose. Tell your caregiver if your nose gets dry or if you get redness or sores on your skin. Never smoke or let anyone else smoke in the same room while your oxygen is on. Doing so may cause a fire.
  
  
• Special positions while sleeping: You may have trouble breathing when lying down. Sleeping in a position with your upper body raised may help you breathe easier. You can use foam wedges or elevate the head of your bed. There are many devices that you can buy to help raise your upper body while in bed. Use a device that will tilt your whole body, or bend your body at the waist. The device should not bend your body at the upper back or neck.
  
  
• Do not smoke: If you smoke, it is never too late to quit. Ask for information about how to stop smoking if you need help.
  
  
• Stay inside during very cold or hot weather. You should also stay inside on days when air pollution or pollen counts are high. If you work where the air quality is bad, you may need to change your work area.

CONTACT A CAREGIVER IF:

• You have a fever.
  
  
• You are coughing up bloody fluid.
  
  
• You are lightheaded, dizzy, sweaty, or nauseated (feel sick to your stomach) after you take your medicine.
  
  
• You are wheezing (a high pitched noise when breathing).
  
  
• You have increased swelling in your legs, feet, or abdomen (stomach).
  
  
• You have questions or concerns about your disease, medicines, or care.

SEEK CARE IMMEDIATELY IF:

• You have trouble breathing all of a sudden.
  
  
• You have a fast heartbeat or your chest hurts.
  
  
• You feel so dizzy that you have trouble standing up.
  
  
• Your lips and fingernails are blue in color.

Learn more about Pulmonary Fibrosis (Aftercare Instructions)