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Living With Idiopathic Pulmonary Fibrosis

No cure is available for idiopathic pulmonary fibrosis (IPF) yet. Your symptoms may get worse over time. As your symptoms worsen, you may not be able to do many of the things that you did before you had IPF.

However, lifestyle changes and ongoing care can help you manage the disease.

Lifestyle Changes

If you're still smoking, the most important thing you can do is quit. Talk with your doctor about programs and products that can help you quit. Also, try to avoid secondhand smoke. Ask family members and friends not to smoke in front of you or in your home, car, or workplace.

If you have trouble quitting smoking on your own, consider joining a support group. Many hospitals, workplaces, and community groups offer classes to help people quit smoking.

For more information about how to quit smoking, go to the Health Topics Smoking and Your Heart article and the National Heart, Lung, and Blood Institute's (NHLBI's) "Your Guide to a Healthy Heart." Although these resources focus on heart health, they include general tips on how to quit smoking.

Staying active can help with both your physical and mental health. Physical activity can help you maintain your strength and lung function and reduce stress. Try moderate exercise, such as walking or riding a stationary bike. Ask your doctor about using oxygen while exercising.

As your condition advances, use a wheelchair or motorized scooter, or stay busy with activities that aren't physical in nature.

You also should follow a healthy diet. A healthy diet includes a variety of fruits and vegetables. It also includes whole grains, fat-free or low-fat dairy products, and protein foods, such as lean meats, poultry without skin, seafood, processed soy products, nuts, seeds, beans, and peas.

A healthy diet is low in sodium (salt), added sugars, solid fats, and refined grains. Solid fats are saturated fat and trans fatty acids. Refined grains come from processing whole grains, which results in a loss of nutrients (such as dietary fiber).

Eating smaller, more frequent meals may relieve stomach fullness, which can make it hard to breathe. If you need help with your diet, ask your doctor to arrange for a dietitian to work with you.

For more information about following a healthy diet, go to the NHLBI's "Your Guide to Lowering Your Blood Pressure With DASH" and the U.S. Department of Agriculture's ChooseMyPlate.gov Web site. Both resources provide general information about healthy eating.

Getting plenty of rest can increase your energy and help you deal with the stress of living with a serious condition like IPF.

Try to maintain a positive attitude; relaxation techniques may help you do this. These techniques also may help you avoid excessive oxygen intake caused by tension or overworked muscles.

Avoid situations that can make your symptoms worse. For example, avoid traveling by air or living at or traveling to high altitudes where the air is thin and the amount of oxygen in the air is low.

Ongoing Care

If you have IPF, you will need ongoing medical care. If possible, seek treatment from a doctor who specializes in IPF. These specialists often are located at major medical centers.

Treatment may relieve your symptoms and even slow or stop the fibrosis (scarring). Follow your treatment plan as your doctor advises. For example:

  • Take your medicines as your doctor prescribes
  • Make any changes in diet or exercise that your doctor recommends
  • Keep all of your appointments with your doctor
  • Enroll in pulmonary rehabilitation

As your condition worsens, you may need oxygen therapy full time. Some people who have IPF carry portable oxygen when they go out.

Emotional Issues and Support

Living with IPF may cause fear, anxiety, depression, and stress. Talk about how you feel with your health care team. Talking to a professional counselor also can help. If you're very depressed, your doctor may recommend medicines or other treatments that can improve your quality of life.

Joining a patient support group may help you adjust to living with IPF. You can see how other people who have the same symptoms have coped with them. Talk with your doctor about local support groups or check with an area medical center.

Support from family and friends also can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.

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Idiopathic Pulmonary Fibrosis Clinical Trials

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. To find clinical trials that are currently underway for Idiopathic Pulmonary Fibrosis, visit www.clinicaltrials.gov.


Idiopathic Pulmonary Fibrosis in the News

May 19, 2014
Common treatment for patients with chronic, progressive lung disease found to be ineffective
A drug used to treat patients with mild to moderate lung damage from the disease idiopathic pulmonary fibrosis (IPF) is no better than placebo for preserving lung function, according to a study supported by the National Institutes of Health. The finding is in the final report of a clinical trial called Prednisone, Azathioprine, and N-Acetylcysteine: A Study That Evaluates Response in Idiopathic Pulmonary Fibrosis (PANTHER-IPF).

View all Idiopathic Pulmonary Fibrosis Press Releases

 
September 20, 2011 Last Updated Icon

The NHLBI updates Health Topics articles on a biennial cycle based on a thorough review of research findings and new literature. The articles also are updated as needed if important new research is published. The date on each Health Topics article reflects when the content was originally posted or last revised.