Get Ready for Your First Appointment

Once you’ve scheduled your first appointment with a pulmonary hypertension specialist, you’ll want to start preparing for it. Being prepared and having questions ready to ask your doctor will help you communicate effectively about your needs and expectations.

PH patients can receive excellent care from a team of specialists, but coordinating appointments and managing medications may take some getting used to. Before long, your physician and nurse specialists will feel like family. Here’s how to prepare for your first appointment.

  1. Read about pulmonary hypertension
    While you’ll have time in the future to learn the ins and outs of PH, having a basic understanding of the illness and some common PH terms will be helpful for your first appointment. Read up on PH in the About PH section, or order our comprehensive guide to living with PH, Pulmonary Hypertension: A Patient’s Survival Guide.
     
  2. Take care of paperwork in advance
    Call your new doctor’s office and ask if they can send you new patient paperwork by mail, fax or email. This will give you the chance to complete your medical history in the comfort of your own home, without feeling frazzled. Make two copies, one for your records and one to bring with you on the day of your appointment.
     
  3. Educate yourself about your health insurance plan
    Visit PHA’s online insurance guidefor general information and resources to help you assess your situation.  Make sure you know the answers to the following questions before your appointment:
    • Do you have prescription coverage?
    • What is your co-pay structure?
    • Do you need referrals and prior authorization and how do you obtain them?
    While you’re on the phone with the doctor’s office, find out whether the office accepts your insurance and how they prefer you to submit your co-pay.
     
  4. Start a binder to organize your medical information.
    Take it with you to your first appointment and every appointment thereafter. As you collect information from different doctors, store it in this binder for future reference. Here are some ideas for things to include:
    • A written list of all your doctors and their contact information
    • A written list of all your medications. Include the following information on the list:
      • Name of medication
      • Dosage and frequency
      • Why you take the medication
      • When you began taking it
      • Which physician prescribed the medication
    • A copy of all your medical records
    • Test results and labs
    • A legal pad to take notes
       
  5. Make a list of all your questions
    Bring this list with you to your appointment and write down your doctor’s answers on the legal pad in your binder. If the doctor wants to order a test, procedure or new medication, you can add the following questions to your list:
    • What is the test, procedure or medication?
    • Why do I need it?
    • What will be done during the test?
    • How will the test results affect how you treat me?
    • How often will I need to have it done?
    • What are the potential complications and/or side effects?
    Don’t be afraid to tell your doctor if you don’t understand an answer or explanation.
     
  6. Find a friend or family member to accompany you
    Ask a family member or friend to accompany you to your appointment. Your loved one can provide support in the waiting room, confirm that you ran through all your questions and take notes on your doctor’s responses. 
     
    Refer your loved one to our caregivers section to for more information about providing care and support to a PH patient.
     
  7. Confirm directions to the office
    You don’t want to get lost or feel hurried on the day of your appointment. Map the route and call the office for information about parking or if you have any questions.

  8. Believe in yourself
    Meeting a new doctor can be daunting, but remember that while your doctor is an expert in his or her field, you are the only one who knows exactly how you’re feeling. If you’d find it helpful, make a descriptive but concise list of your symptoms ahead of time so you have something to refer to when your doctor asks you questions. Remember – no one knows your body better than you.

 

 

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The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.