Tips for working with my healthcare team
Working closely with your healthcare team can help best manage your health. Here are some things that can help you.
- Prepare a written list of the questions you want to ask. Put the most important questions at the top of your list. Tell your team that you have questions when you meet with them.
- Take notes when your question is answered. If you do not understand the answers, ask for more details.
- Show your healthcare team a written list of all your symptoms. Be honest. It will help them see the whole picture.
- Bring along all your medications or a list of all your medications (including herbal remedies).
- If you are not sure you are taking your medication correctly, ask for a review of when and how to take them.
- Bring a friend or relative to your appointment. He/she can help you remember details and take notes for you.
- Ask about programs in your community that help people with IPF and other lung diseases. Ask about joining a pulmonary rehabilitation program.
Are there any questions I should ask my healthcare team?
IPF is a progressive disease. This means it gets worse over time. For some people, this happens slowly. For others it happens quickly. Sometimes the disease does not seem to get worse for a while and then it will flare up and get worse quickly.
IPF can flare up and cause worsening symptoms. It is therefore a good idea to have a plan to manage flare ups. Some things your plan might contain include:
- What to do at home to help with worsening symptoms.
- When and how to get medical help.
- When to go to emergency or the hospital.
Since IPF is progressive and shortens one’s life, you will want to work with your healthcare team and family about the future. Your discussion might include topics such as:
- Your goal for your life. What you hope to do. What is important to you. What you want to happen at the end.
- What the future might look like for you.
- Lung transplantation options for you.
- Research trials that might be available to you.
- Options for palliative care in your area.
Who might be a member of my healthcare team?
Your healthcare team can help you learn more about IPF and how to cope with it. People on your IPF healthcare team should include your family doctor, your support person (who might be a family member or friend) and your local pharmacist. Other members might include:
- A respirologist (lung specialist)
- A nurse practitioner.
- A certified respiratory educator (CRE), a health professional with special training in lung disease. If there is no CRE available in your area, you can speak to one from the Lung Association's free helpline (call 1-866-717-2673).
- The pulmonary rehabilitation team. This may include a nurse, respiratory therapist, physiotherapist, pharmacist, dietitian, social worker and more.
