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Working with Your Healthcare Provider

When facing a rare and serious lung disease such as interstitial lung disease (ILD), it’s important to get the best possible care. Because ILD is rare, it is not well-known, even among some pulmonologists, who are healthcare providers specializing in lung disorders. That’s why it’s important to find a pulmonologist with the familiarity and expertise needed to help you understand the disease and how it may progress over time.

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Tips for Getting the Most from Your Healthcare Provider Visit

The suggestions below are based on publications by the Agency of Healthcare Research and Quality and The Joint Commission. Note that these are general guidelines for anyone and are not specific to people with ILD.

  • Come to your visits prepared. You may find it helpful to write down questions in between appointments, and bring the list of questions with you. Since time with your healthcare provider is always limited, this will help you make the most of it; also, write down a list of any medicines (and the doses) you are currently taking
  • Bring a notepad. You may find that at some of your appointments, you’ll be given what seems like an overwhelming amount of information. It’s OK for you to take notes to help you follow important instructions and information in the future
  • Don’t be afraid to ask questions. If you do not understand something about your disease, or instructions you have just been given, don’t hesitate to ask your healthcare provider to explain it further. Asking questions and sharing information may help improve the quality of the care you get
  • Bring someone with you. A friend, family member, or other caregiver may be able to help by taking notes, scheduling appointments, and by giving the healthcare provider another point of view on how you are living with your disease
  • Follow up with your healthcare provider. If you need further explanation about your condition or instructions for care once you get home, talk with your healthcare provider. Also, ask about the results of any tests your healthcare provider may have performed and any next steps you need to take. Always call your healthcare provider if your symptoms get worse

Other Things You Can Do

  • Reach out to support groups. You may find it useful to contact advocacy and support groups to get advice and tips on how to cope with ILD. You may also get answers or advice that you’ll want to run by your healthcare provider. Sometimes it’s also nice just to connect with other people who truly understand what you’re going through. Connect with other people living with ILD through support groups.
  • Don’t stop learning. Knowing as much as you can about ILD and how it will affect you will let you:
    • Set realistic goals
    • Make meaningful choices
    • Remain in control of your care longer
    • Enjoy daily activities for as long as possible

Always be sure to go to reliable, respected sources for your healthcare information.

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