Preparing For Your First Appointment

Preparing for your first appointment ahead of time will help you make sure you get the most out of your appointment and can communicate effectively with your medical team. Here are some tips and ideas.

  • Learn about the disease. As you go along, you will learn more and more about PH, but it is a good idea to have an understanding of the basics of what is happening to your body. Here’s a good place to start.
  • Fill out paperwork ahead of time. Call the doctor’s office and see if they will fax, email or mail you the required first appointment paper work. This way you can complete items, such as your medical history, at home. This will allow you to give better details and not feel stressed at the time of the appointment. Make two copies – keep one for your own records and bring the other with you to your appointment. Or, if you cannot get the paperwork, write down your medical history on a sheet of paper while at home. Bring this to your appointment, as it will make filling out forms the day of that much easier.
  • Create a binder for all your medical information. Take this binder with you to all of your appointments. As you visit different doctors, ask for copies of your medical records and keep them in this binder for future reference. Other items that are good to include in your medical binder are:
    • A list of all your doctors and their contact information
    • A list of your medications including information such as: name of medication, dose and frequency, why you take the medication, when you began taking it, and which physician prescribed the medication
    • A copy of all your medical records
    • Copies of test and lab results
    • A pad of paper and pen to take notes at appointments and to jot down questions before appointments
  • Make a list of any questions you may have. Doctor’s appointments can be overwhelming and often we forget to ask questions we had, only to remember the questions after the appointment. As questions come up during your day-to-day life, jot them down in your medical binder, that way you will be sure to ask them during your appointment. Questions that you may want to ask during your first appointment include:
    • How often should I come to see you?
    • How often do I need to have cardiac catheterization?
    • What are the potential side effects of my medication?

If your doctor is ordering a test or procedure or prescribing new medication:

  • What is the test/procedure/medication?
  • Why do I need it?
  • What does the test/procedure involve?
  • What will the results of this test/procedure tell you/how will they change my course of treatment?
  • What are the potential complications and side effects?

If you wear a pump for your medications, questions may include:

  • What do I do if my line leaks or comes out?
  • How do I need to alter my routine to accommodate the pump?
  • You may also want to ask about any changes you should make in your diet, exercise regiment and other lifestyle changes

Do not be afraid to ask your doctor/medical team to further explain any answers you receive if you don’t understand them. Remember: the more effectively you communicate with your medical team, the better the care you will receive and the better you will feel about going to your appointments.

  • Have a family member or friend accompany you to your appointment. It is a good idea to have the person who will be your primary caregiver come to all of your appointments. Not only can they provide you with moral support, they can make sure you didn’t forget to ask any questions. Attending appointments will also help your caregiver to understand your disease better and help them to advocate for you in emergency situations.
  • Confirm the location of and directions to the clinic. Plan out a route for yourself and make sure you call the office to ask about parking or any other questions about getting there. This way, you won’t feel rushed or stressed the day of the appointment.

Remember: you are your best advocate. A PH diagnosis and meeting new doctors can feel daunting and overwhelming. Remember that although the doctor and his team are experts in PH, you are the only one who knows what is going on with you. Keep lists of symptoms, questions and anything else that may come up before your appointment so that you can be prepared to have a good discussion with your doctor. Don’t be afraid to ask for explanations. You know your body best and the more you can tell your doctor about your particular condition, the better the treatment will be suited to your particular needs.