Learning how to manage your lung disease is the first step in maintaining your health and regaining quality of life. This is much easier with a team. When you are diagnosed with an illness, it can feel overwhelming. You will likely have many questions and the answers may not always be clear at first. Not all people with lung disease have the same symptoms and treatment will differ from person to person. It is important to talk to your healthcare provider about your treatment options and get answers to all of your questions.
If lung disease was a team sport, who would you want on your team? Consider family, friends, and healthcare professionals such as your:
- Family doctor
- Lung doctor (respirologist or a pulmonologist)
- Pulmonary rehab specialist
- Pulmonary fibrosis educator
- Home oxygen provider
Some things you may wish to discuss with your team include:
- Your symptoms, especially if they are getting worse
- Chores or activities you find difficult
- Things you can do to stay healthy (nutrition, eating well, exercise)
- Your triggers
- Using your quick-relief medicine more than usual or having more pain than usual
- Questions about your medications or their side effects
- What to expect in the future
Navigating the healthcare system – this can be a challenging task. Discussing it with your team will allow you to make a plan and a list of contacts and resources you will need help with. Ask questions and take notes (along with your caregivers) to understand what needs to be done in order to manage your pulmonary fibrosis.
Make sure to build a good relationship with your doctor and other healthcare providers. They are there to help you manage your disease, help you create a lung disease action plan, and answer any questions you may have. Learning how to manage your disease is the first step in maintaining your health and regaining quality of life. This is much easier with a team.
Those who become your informal caregivers (family and friends) will play a very important role in your life. It is your informal caregivers who will likely help you with daily tasks such as transportation to appointments, management and helping with overall clarifications. It is important to keep them informed about any changes or needs you might have.
Below are some things that you can do to make your medical appointments go more smoothly and ensure you get the best care possible:
- Create a healthcare team and build a good relationship with them.
- Bring a written list of questions with the most important ones listed at the top.
- Bring a written list of your symptoms, and possibly a diary of these symptoms. How and when did you feel those symptoms? Your doctor cannot help you without knowing how you feel.
- Take notes during the appointment and ask questions if you do not understand something.
- Bring a friend or family member with to help you understand, remember the details, or take notes.
- Bring a list of all your medications, including vitamins and herbal medications.
- If you don’t know if you are taking your medication correctly, ask your doctor, pharmacist, or educator for help.
- Ask about programs, such as a pulmonary rehabilitation program or support groups, in your community for people with your particular lung disease.