Stage 1: Recently Diagnosed

Stage 1 of IPF is after a recent diagnosis. 

What should I focus on when I am recently diagnosed?

When you are diagnosed with IPF you may want to:

• Partner with your pulmonologist to develop and individualize your action plan.

• Learn about IPF, including the symptoms, treatment and prognosis.

• Ask about the medications that may be used for IPF. Learn the dose and time the medicine is taken, how it may be helpful and what side effects to watch for.

• Live a full life with IPF through:

  • Regular exercise. Stay active. Physical exercise is the most important thing you can do for yourself.

  • Healthy eating

  • Rest

  • Support from others

• Consider joining a support group in your area.

• If you smoke, work with your doctor on quitting smoking.

• Think about what you can do to avoid infections.

• Begin thinking and talking about advance directives.

• Focus on today — on what you can do, not what you can’t.

• Live life one day at a time.

• Ask your healthcare provider about clinical trials and clinical research

• Think about whether lung transplantation is an option for you personally, and share this information with your pulmonologist.

Consider purchasing a finger pulse oximeter and “check in” with the oximeter occasionally while performing activities of differing energy demands, and keep a log. Tell your doctor if readings are ever below 90 percent.

What to expect from the person with IPF in this stage

• The person with IPF may be entirely asymptomatic; however, it would not be uncommon for them to have shortness of breath when exerting, dry cough and/or fatigue.

• Shortness of breath may only be present with extreme exertion (e.g., climbing a hill). Remember, even people without IPF are at least a little short of breath going up two flights of stairs.

• Cough can be frequent and bothersome. It may only occur when the person with IPF talks for long periods of time or when they are exerting.

• Fatigue is common and challenging to treat. Eating well, exercising and getting plenty of high quality sleep can help.

• The person with IPF who is just diagnosed may experience an array of emotions. They may be afraid or angry, anxious or short-tempered.

• Many people with IPF in Stage I want to know more about the disease. We discourage online searching at random sites, because much of the information is outdated or inaccurate.