Pulmonary fibrosis

Pulmonary fibrosis – questions to ask your health care professional

It can be difficult to know what to ask your GP, nurse or specialist. We’ve put together some questions you might like to ask as you see different health care professionals at different times during your diagnosis and treatment.

Diagnosis

It’s important to discover if your symptoms might be caused by pulmonary fibrosis, so your GP or specialist will do some tests.

  • What tests will I need and what will they involve?
  • Why are these tests important?
  • Where will these tests happen?
  • When will I find out the results?

After diagnosis

Find out more about pulmonary fibrosis, how it will affect you and what treatment and support is available.

  • What is the cause of my pulmonary fibrosis?
  • Where can I get more information?
  • What treatment will I have?
  • How will I be monitored?
  • How advanced is my pulmonary fibrosis?
  • What support is available to me?
  • What can I do to help my condition?
  • Can I have the contact details for a specialist lung nurse and when should I contact them?
  • How often will I need to come back for appointments and where will these be (at my local hospital or at a specialist centre)?

“Keep asking questions; if you don’t understand then ask again. I think it’s important that I understand what is happening and what it means for me.”  Ann, who lives with IPF

Managing your pulmonary fibrosis

Medication can’t cure established pulmonary fibrosis, but it can help treat the underlying cause, slow down its progression and help with your symptoms.

  • What medication is available?
  • Am I eligible for these drugs?
  • What are the side effects?
  • Where can I find additional information about these medications?
  • How will I know if the treatment is working?
  • What happens if I decide not to have this treatment?
  • Are there any clinical trials I can take part in?

Oxygen therapy can help you feel less out of breath and tired if your blood oxygen levels are low.

  • How can oxygen therapy help me?
  • How will I be assessed to see if oxygen could help?
  • What sorts of oxygen therapy are there?
  • Will I be able to take my oxygen supply out and about or on holiday with me?

Whether a lung transplant is suitable for you depends on things like your age and general health.

  • Is a lung transplant an option for me?
  • What are the risks and benefits of having a lung transplant?
  • What is the process for getting a lung transplant?
  • How long would I have to wait?

Pulmonary rehabilitation classes provide physical activity and advice on looking after your lungs.

  • What will the classes involve?
  • How will they help me?
  • How should I keep exercising after the classes finish?

Thinking about the future

It’s difficult to predict how pulmonary fibrosis will progress. Everyone is different so ask about your individual situation.

  • What can be done to help me if I get more breathless?
  • What services are offered to help with my symptoms?
  • How can I and my carers access these care services?
  • Is there anything I need to do to plan for the future?

Other places I can get information and support

Call our helpline

Our team of specialist nurses and advisers are dedicated to answering your questions. Ringing the helpline never costs more than a local call and it’s usually free, even from a mobile. Call 03000 030 555 from 9am to 5pm, Monday to Friday.

Pulmonary fibrosis patient passport

The pulmonary fibrosis patient passport can help you to find out whether you're receiving the care you're entitled to, and what to do if not.

Order your free passport here

Get in touch with the BLF community

Join your local  support group, or take a look at our web community.

If you have concerns or need advice, call our helpline on 03000 030 555 between 9am and 5pm on a weekday or email them.

We'll take good care of your personal info and you can update the way we contact you at any time - check out our privacy policy at blf.org.uk/privacy to find out more.

Download this information (PDF, 343KB) Order your PF information >

Last medically reviewed: August 2019. Due for review: August 2022

This information uses the best available medical evidence and was produced with the support of people living with lung conditions. Find out how we produce our information. If you’d like to see our references get in touch.