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Pulmonary fibrosis

My pulmonary fibrosis personal organiser

If you’ve been diagnosed with pulmonary fibrosis, including IPF, this organiser can help you take care of yourself and feel more in control.

Choose the pages that you feel will help you.  Some pages you might want to take along to appointments with your health care professional, others you could share with your family, carers and friends. And some are for you so you have all the details you want in just one place.

There are different pages for you to print and fill in. You can print them all or select just the ones that will help you.

Download and print the whole pulmonary fibrosis personal organiser (PDF, 1.25MB)

Use and download these personal organiser pages to keep track of your care

About me

Write down all those details in one place

About me (PDF, 187KB)

My key contacts 

Keep details of anyone you may need to contact about your pulmonary fibrosis all together

My key contacts (PDF, 162KB)

Making the most of my appointments with my doctors and nurses

It’s likely you’ll see lots of different health care professionals. Keep track of all your appointments with your GP, nurse and specialists and what they tell you using this page. And also to think of things you want to ask at your next appointment.

My appointments (PDF, 310KB)

Here are some ideas about the questions you might want to ask your health care professionals at different times during your diagnosis and treatment.

Keeping track of my pulmonary fibrosis treatment

You might be getting medication, or going to pulmonary rehabilitation or other exercise classes, or using oxygen. On these pages you can keep track of your treatment as it changes.

My treatment (PDF, 215KB)

Share these pages with your specialist doctor, GP, nurse or other health care professional

Information for your health care professional

We’ve put together some information for you to show your health care professional about why you’re using this organiser and how you want them to support you.

Information for my health care professional (PDF, 75KB)

What’s my diagnosis?

You should get your diagnosis from a multidisciplinary team. This page helps you write down what you understand about your diagnosis and think of questions you now want to ask, so you’re ready to discuss them with your health care professional.

My diagnosis (PDF, 212KB)

Am I getting the best care for pulmonary fibrosis?

Have a look at this list to check you’re getting all the care and support you need. This will help you to ask your health care professionals about anything you’re not getting.

My checklist (PDF, 173KB)

What if my pulmonary fibrosis symptoms get worse suddenly?

If you have some types of pulmonary fibrosis, your symptoms can get worse suddenly. This is called an exacerbation or a flare-up. Use this page to agree a plan with your health care professional about what to do if your symptoms flare up like this.

My flare-up plan (PDF, 171KB)

How can you help me achieve my goal?

Walking the dog? Seeing your family at the other end of the country? If something is important to you, this page helps you talk to your health care professional about how you’re going to achieve it.

My goals (PDF, 189KB)

Other resources to help you

How can I get the care I want in the future?

To get the best care and have the best quality of life for you and those close to you it helps to think about how you want to be cared for and where.  Find out more about thinking and planning ahead, and why it’s important to write down what matters to you and your decisions.

Thinking and planning ahead

Look after your mental health

Living with pulmonary fibrosis, you might feel low or anxious at times. Have a look at our detailed information about looking after your mental health and where you can find support.

Looking after your mental health

Download the whole personal organiser (PDF, 1.25MB)

We use your comments to improve our information. We cannot reply to comments left on this form. If you have health concerns or need clinical advice, call our helpline on 03000 030 555 between 9am and 5pm on a weekday or email them.

Last medically reviewed: July 2019. Due for review: July 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.