Banner: Life with IPF

Newly diagnosed with IPF1

If you are newly diagnosed with idiopathic pulmonary fibrosis you probably have numerous thoughts and questions running through your head. Now is the time to look for information and guidance from your doctor and treatment team and for support from family and friends to help you on your journey with IPF:

  • Find out as much as possible about the disease and your therapy options from your doctor and treatment team. Have a look at our IPF treatment pages to see what options you might have.
  • Equally as important, seek out support from friends, family and patient groups. Although IPF is a relatively rare disease, there are many societies and foundations for patients with IPF. Have a look at our resources page to find the patient association that’s right for you.
  • Think about changes that you can make to your lifestyle and surroundings to reduce symptoms and improve your quality of life. Some suggestions are in the table below:

Life with IPF

Backgrounder: Life with IPF

Lifestyle Factors

There are a number of different changes that you can make to your lifestyle that may help reduce your symptoms and improve your quality of life:

  • If you still smoke, there is no better time than now to quit. Although this may be easier said than done, your doctor will be able to guide you through the process.2
  • Get active and stay active – both physically and mentally. As IPF progresses, physical activity will become more and more difficult. It is important to do what you can and rest when needed. Staying mentally sharp will help for the later phases.1,3
  • Like many illnesses, for patients with IPF it is important to maintain a healthy diet. Diets low in sodium, fat (particularly saturated fat), and added sugar, but high in whole grains and protein are beneficial for patients with IPF.1,3
  • In addition to being active, it is also important to get your rest, relax and avoid stress. Healthy sleep patterns and relaxation techniques are beneficial. As the disease progresses, everyday activities will become more exhausting. Take your time and take a break when you need it. Listen to your body.1,3
  • You should be cautious travelling to high-altitude destinations because the low oxygen levels in the air may cause increased breathlessness4

Your Surroundings

In addition to lifestyle changes, you may find it helpful to look for ways to make your day-to-day life easier on your lungs by making a few adjustments to your home/surroundings:

Take steps to improve indoor air quality and limit irritation to your lungs by:

  • Changing or installing air filters
  • Limiting the use of woodstoves and fireplaces
  • Removing dust regularly and promptly
  • Limiting the use of harmful cleaning products which leave fumes lingering in the air
  • Hindering mycobacterial growth, these are particularly found in bathrooms/showers
  • Limiting pet dander, especially in the bedroom
  • Avoiding aerosols
  • Avoiding using toiletries with strong fragrances
  • Avoiding fine, airborne powders such as flour and wood dust

Who will be involved in my treatment?

Expert video: Who will be involved in my treatment?

Talking about IPF - What to tell family and friends?

Expert video: Talking about IPF - What to tell family and friends

What can I do to get involved in my IPF care and get the most from my doctor's visit?

Expert video: What can I do to get involved in my IPF care and get the most from my doctor's visit?

References

  1. National Heart, Lung, and Blood Institute. What Is Idiopathic Pulmonary Fibrosis? Available at: http://www.nhlbi.nih.gov/health/health‐topics/topics/ipf. Accessed January 28, 2015.
  2. Wells AU, et al. Interstitial lung disease guideline. Thorax 2008;63:v1–v58.
  3. Pulmonary Fibrosis Foundation. Pulmonary fibrosis patient information guide. 2014. Available at: http://www.pulmonaryfibrosis.org/docs/default‐source/patient‐information-guides/pff_handbook_2014_v7_10‐21_print.pdf?sfvrsn=0. Accessed January 7, 2015.
  4. Luks AM. Do lung disease patients need supplemental oxygen at high altitude? High Alt Med Biol 2009;10:321–327.

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