Questions for Your
Information for patients with pulmonary fibrosis about
questions to ask their doctor.
Your healthcare team can give you lots of support, valuable information and advice. This section will help you plan what to say and what to ask at each appointment, so that you can make the most of your time.
Going to your appointments with some questions prepared can help you get the most out of them. Knowing what is happening and why, can help you feel more actively involved in your care and help with practical decisions in the future.
You can use the following questions when you meet with your doctor or healthcare team. These can also act as a guide and help you think of any further questions or any specific concerns you have.
- What are the tests for and what will they involve?
- When will I have the tests?
- Will the person doing the test be the one looking after me?
- How soon after the test will I get the results and who will give them to me?
- Who can I talk to about practical issues if I can’t manage my symptoms?
- What can be done to manage or treat my symptoms?
- How long are my symptoms likely to last?
- Why would my symptoms be getting worse?
- What changes do I need to watch for in terms of my breathing ability?
- When am I at the biggest risk of developing worsening lung problems?
- How will my symptoms be monitored?
- Is it normal to be feeling the way I do?
- I have been feeling really down. Is this normal?
- What can be done, or what treatments are available?
- What treatments can help?
- Can you tell me about the potential benefits?
- What are the side effects of treatment?
- When is the right time to start treatment?
- Who can I speak to about how I am feeling?
- Are there any support groups that I could get in touch with?
- Will I be able to go on holiday?
- Do I need to change what I eat?
- What exercise can I do?
- Are there any activities that I need to avoid?
- Are there any gadgets that might help me around the house or when I'm out?
- How is this going to affect me over the next year?
- Can I have children?
- Will my children get pulmonary fibrosis?
- What is the life expectancy for someone affected by pulmonary fibrosis?
Remember to ask your doctor if there is anywhere you can go to and ask questions if you think of them later. This can help take some pressure off the appointment, knowing that you don’t have to get everything answered at once.
You might have questions that you are uncomfortable talking about. Remember that your healthcare team have experience in this area and are there to help and offer support.
Planning next steps with your healthcare team
It can be reassuring to know what's going to happen next in your medical care, and when. So make sure to create an appointment calendar or something to help you keep track of everything. It can be used to collect details of the tests as well as appointments you will have over the next few months, to help you plan ahead.
“I now see my doctors as more of my team that are helping me to live with it. In the beginning it was always really scary to go to them, because they were always telling me something new. They were always telling me something had changed. This is a new symptom. Because it was progressing fairly quickly in the beginning. You don't know, is that going to just keep going? Is it going to get worse? Am I going to level off and have this level of function for however long I have? I feel like in the beginning…it was more scary, and much more official if that makes sense. Now it's more like, I'm going back and chatting with people who know me. We have more of a relationship, and it's more teamwork, and they're listening to what I'm saying as well. I'm responsible for some of my own health. I can tell them what I'm doing, how I'm being active, and those kinds of things.”– Lilly, BC
(@ 8 years post-diagnosis)*
* Name has been changed for privacy.