How to Prepare?

Once you have set up an appointment with a healthcare provider, it is time to prepare, so you get the most out of it. Being open with your healthcare provider can sometimes feel uncomfortable but is crucial for proper diagnosis.  Coming prepared can help you feel more comfortable.

What should I bring?

Because providers have different levels of experience with patients with von Willebrand disease (VWD), you may want to bring a print out of your risk assessment, along with your responses to the questions below.

Before visiting with your healthcare provider, it can be helpful to prepare by writing down answers to the questions below in as much detail as you can.  Some people find it useful to have a notebook so each time you experience a bleeding symptom, you can write it down in one spot.  This will help you and your healthcare provider in discussing what steps to take next.

  • What are your bleeding symptoms (for example, nosebleeds, bruises, etc)?
  • When did your symptoms begin?
  • What lead to these symptoms?
  • How frequent are your symptoms?
  • Make note of your energy level.  When was it high? When was it low?
  • Have you had nosebleeds that lasted longer than 10 minutes? How often?
  • Do you experience frequent bruising?
  • Do your gums bleed?
  • Have you experienced prolonged bleeding after a surgical procedure, including dental surgery?
  • Do you have prolonged bleeding after simple cuts or lacerations, or after shaving?
  • Do you have painful, swollen joints?
  • Do your symptoms interfere with your daily life?
  • Has anyone in your family had bleeding symptoms?
  • Has anyone in your family been diagnosed with a bleeding disorder, such as von Willebrand disease or hemophilia?
  • Are you taking any prescription or nonprescription medications (for example, aspirin, ibuprofen, or others)?

What should I ask?

Being prepared for your healthcare provider visit also means coming with a list of questions you may have for your provider about your symptoms and care.  Make sure to come up with your own questions but here is a list of helpful ones to get you started:

  • Will any diagnostic test be run? If yes, which ones? When would I find out the results?
  • If lab work will be done, which lab is used? How can I find out it that lab is covered by my insurance?
  • Is there anything I should do to prepare for the lab tests?
  • Will I need to be referred to a specialist for testing and diagnosis?
  • What if my labs don’t show anything? Do any get repeated?
  • How long will it take to get a diagnosis? What are the steps?
  • Are there any activities I should avoid or modify?
  • What do you think may be the underlying cause of my symptoms?
  • How can I manage my pain/symptoms while I wait for a diagnosis?
  • [If healthcare provider prescribes treatment] Does this treatment plan address any underlying causes or just the symptoms?
  • Are there any other medications that I should avoid due to my diagnosis or treatment plan?