[ NEWLY DIAGNOSED · FOR PATIENTS AND FAMILIES ]
I have just been diagnosed with pulmonary fibrosis.
What should I do next?
A new diagnosis brings many questions. Start by clarifying the exact diagnosis, gathering your records and agreeing a specific plan with your clinical team.
Clarify the exact diagnosis.
Ask whether this is IPF, disease associated with an autoimmune condition, an exposure or another cause. Assessment combines history, investigations and high-resolution CT (HRCT). Some cases need discussion between different specialties. Not everyone needs a lung biopsy.
What supports my diagnosis and what remains uncertain?NHLBI / NIH · Diagnosis of pulmonary fibrosis ↗
Prepare your records for the appointment.
Bring the digital HRCT images and report, along with previous relevant investigations. Include lung function results, blood tests, your medicine list and a brief history of symptoms, work and exposures. Do not arrange new tests without medical advice.
Do we have the images themselves and earlier measurements for comparison?NHLBI / NIH · Diagnosis of pulmonary fibrosis ↗
Understand the measurements and follow-up.
FVC measures the amount of air you can forcefully breathe out after a deep breath. DLCO/TLCO estimates gas transfer from the lungs into the blood. Your team may also assess oxygenation at rest and during activity. One result does not describe your whole course; comparisons need clinical context.
When should testing be repeated and what changes mean I should contact you sooner?ATS/ERS/JRS/ALAT · IPF and PPF guideline (2022) ↗
Agree a personal treatment plan.
Options depend on the diagnosis, severity, other conditions and tolerability. Ask about the aim of each treatment, possible side effects and monitoring. Oxygen is prescribed when indicated; a new diagnosis does not automatically mean you need it. Do not change medicines or oxygen flow outside your agreed plan.
What do we expect treatment to achieve, and whom should I call if problems occur?NHLBI / NIH · Treatment of interstitial lung diseases ↗
Support your everyday life.
Ask about tailored pulmonary rehabilitation and safe activity. Rehabilitation combines exercise, education and support and can improve breathlessness and function. Also discuss smoking cessation, relevant exposures, vaccination review, nutrition and emotional support.
Which programme fits my abilities and needs?American Thoracic Society · Pulmonary rehabilitation ↗
What to bring
This is a record-preparation checklist, not a request for new tests. Ticks last only while this page is open; they are not stored or transmitted.
An appointment with better questions.
For an initial assessment or a second opinion, organised records help make the discussion more useful.
Sources and scope
An educational guide based on the public sources below. It is not an individual diagnosis or prescription. Authorship or personal endorsement by Prof. Demosthenes Bouros is not claimed.
Sources checked: 10 October 2026.