Pulmonary fibrosis

Questions to ask your health care professional when you have PF

It can be difficult to know what to ask your GP, nurse or specialist when you have PF.

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 are caused by PF, 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 PF, how it will affect you and what treatment and support is available.

  • What does PF mean? Where can I get more information?
  • How advanced is my PF?
  • 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? When should I contact them?
  • How often will I need to come back for appointments?

“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

Treatments

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?

Medication can’t cure PF, but it can help slow down its progression and help with your symptoms.

  • What medication is available for PF?
  • 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 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?

Thinking about the future

It’s difficult to predict how PF 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. 

We also have a new free service for people living with IPF, their family and carers. Our IPF support service runs for 6 months where you'll talk with our IPF specialist advisor about topics important to you. 

Get in touch with the BLF community

Join your local Breathe Easy or pulmonary fibrosis support group, or take a look at our web community.

Order your PF information >

Last medically reviewed: March 2017. Due for review: March 2019

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.