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    • #15724
      Marta Ribeiro
      Keymaster

      As a person living with pulmonary fibrosis, it’s important to fully understand your disease. Take the time to learn about the condition and how it’s treated, so that you can play a proactive role in your treatment and get the most from your health care team. We’ve put together a list of six ways to get the most out of your doctor’s appointments using information from the Pulmonary Fibrosis Foundation.

      1. Be open and honest with your health care team. 
      Share any issues or concerns you have about your treatment or any possible side effects, regardless of how insignificant you think they may be. Ensure that you fully understand everything your health care practitioners are saying — ask them to skip the medical jargon and explain everything in simple terms.

      2. Be prepared for appointments. 
      Make sure you have all your relevant paperwork with you when you visit your health care team. Prepare a list of questions that you may have so you don’t forget anything while you’re there. Make sure you know how to get to your appointment in advance so it’s one less thing to worry about on the day.

      3. Take notes. 
      Don’t be afraid to take notes while you’re at the doctor’s office or hospital. Ask your health care team to spell out all medications for you, so you don’t get them confused with other similar sounding medications. Don’t be afraid to ask them to repeat anything you didn’t quite understand.

      4. Take along a friend or loved one for support. 
      This is especially important during the first few visits when everything is new and a little bit frightening. They will be able to support you emotionally and be an extra pair of ears when it comes to remembering what the doctor said.

      5. Join support groups
      You can either join a local PF support group or an online PF community. Speaking to people who are going through a similar experience will give you practical and emotional guidance and give you a safe place to talk openly about your illness.

      6. Stay informed. 
      Use reliable Internet sites and medical journals to keep up to date with the latest treatment and research information about pulmonary fibrosis. Find out if there are any clinical trials you could participate in. Ask your doctor about pulmonary rehabilitation, which can help you learn how to best manage your disease.

      Do you agree with these? Would you add any other tips to this list? I would love to hear from you – share your opinion below! 

    • #22348
      Nan
      Participant

      Thank you that is great information. I came across this: http://pulmonaryfibrosismd.com/how-to-get-the-most-out-of-your-doctors-visit/ also with some excellent ideas.

    • #22362

      Hi Nan,

      So glad you found this article helpful! I hope it is informative for your upcoming appointment in Toronto too. I’ll be thinking of you… Happy New Year!
      Char.

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