If you’ve received an idiopathic pulmonary fibrosis (IPF) diagnosis, you probably have plenty of questions about the condition, treatment, and long-term outlook. The fact that it’s idiopathic, which means the cause is a mystery, can make dealing with IPF even more challenging.
That means one of the most important things you can do if you have IPF is to be your own advocate. This condition, in which lung tissue becomes stiff and scarred, has no cure. Symptoms, however, often can be managed, especially early on. But it’s usually up to the person dealing with IPF to learn as much as possible about symptom control and other aspects of the disease.
Here are some ways you can advocate for yourself if you have this chronic lung problem.
Make the most of your appointments
Doctor appointments can often feel rushed. Your doctor may not spend a lot of time explaining changes in your condition or the next phase of treatment. Your doctor won’t know you have questions or concerns if you don’t share them. So speak up, and never feel self-conscious about asking questions or sharing your anxieties about your health.
When you ask questions, make sure you understand the answers. Have your doctor repeat the answers or explain them differently if you’re confused. To make the most of your doctor visits, try the following tips:
- Write down questions you have in between visits and bring that list to your next doctor appointment.
- Take notes during the appointment.
- Bring someone with you to the appointment to help keep track of what the doctor says.
- Call your doctor’s office if you think of a question after the appointment. A nurse may be able to answer right away. Or, you may get a call back with the information you need. Don’t wait until your next appointment if your question has to do with medications and side effects or new symptoms.
If you’ve been recently diagnosed, consider these questions for your doctor:
- What does IPF mean and how does it affect my health?
- What are the treatment options?
- How often should I see a doctor?
- What lifestyle changes should I make?
Learn about IPF
You’ll be a much more effective advocate for yourself if you’re as informed about IPF as possible. In addition to getting information from your doctor, you should gather information from other reliable sources, too. Established medical institutions, government websites, and IPF advocacy groups usually provide medically sound information.
Ask your healthcare provider about resources that will provide you more information. Hospitals sometimes host public forums on specific medical conditions, as well as on more general topics, such as caregiving, healthy aging, alternative or complementary medicine, Medicare, and more.
You may also find online information in the form of webinars, in which doctors answer questions from patients or from a moderator. Many doctors also post videos discussing issues such as IPF, or post articles or blogs they’ve written. Getting good medical information from multiple sources can be helpful. You may hear something your doctor never mentioned that you can discuss at your next appointment.
Find support groups
Sometimes being a good IPF advocate means joining the IPF community. A local hospital may have IPF support groups or perhaps support groups that include individuals with a range of lung diseases, such as IPF, lung cancer, and chronic obstructive pulmonary disease (COPD).
If your doctor is unaware of such local support groups, check with your hospital or local branch of the American Lung Association. The Pulmonary Fibrosis Foundation is a comprehensive resource for information about IPF, new developments in treatment, and support for patients and their families.
You may find a great deal of support in the online IPF community. Online forums and chat rooms can provide a lot of information and perspective from people facing the same challenges you are. Often, others with IPF have learned a lot about the condition that they’re happy to share with others. Advocating for yourself means communicating with a wide range of knowledgeable and concerned people. You may end up being a helpful resource for someone else with IPF.
Participate in your care
Advocacy means more than asking questions and becoming educated. You also have to be proactive about your treatment. Don’t leave your care entirely up to your doctor. Approach IPF treatment as though you are on a team with your doctors and other healthcare providers. As the captain of the team, you’re in charge.
That means participating in pulmonary rehabilitation or oxygen therapy, if that’s appropriate for you. It means not skipping appointments and taking your medications as prescribed.
Being proactive also means adhering to the lifestyle changes that are necessary for you to manage your symptoms. If you’re still smoking, seek help from your doctor or smoking cessation programs in your community. It’s the single best thing you can do for your lung health.
Finally, being an advocate sometimes means having to speak up if you feel your treatment isn’t working or if your doctor doesn’t seem to be giving you the best care possible. If you’re in the hospital, and you have concerns about your care, tell your doctor or ask to talk to a nursing supervisor. The hospital may have a patient liaison whose job is to respond to patient concerns or complaints.
And though it may be awkward at first, never hesitate to get a second opinion about a diagnosis or treatment plan. You may find that your original doctor was doing the best job possible. But when it comes to your health or the health of someone you care about, being an effective advocate means speaking up when needed.