Tips for the Doctor's Office

Make Lists

You may not always need to share all of your information with every doctor you see but the following items are particularly important: A list of all of your medications and needed refills, a summary of your medical history, a list of your recent tests, a list of your questions, concerns and new information, forms your doctor needs to address.

Plan Ahead For Your Doctor Visit

Prepare your questions and a list of your symptoms, ( For example, racing heart, blisters, etc) Be concise. When you schedule your appointment, ask if you should have test results or other medical records sent to the doctor’s office before your visit. Nothing is worse than rescheduling for new tests you could have taken earlier or not had with you.

At Your Visit

Be on time. Give and expect respect. Bring your lists and tell the doctor what you want to discuss and your goals for the visit. Be as brief as possible.  Communication is an especially important skill. Make every word count because the doctor may only have 15 minutes to spend with you.

Be sure you understand what the doctor is advising you. If not, ask questions until you understand. If there is not enough time for all of your questions: Ask for handouts and brochures that will give you more information or schedule another visit.

You and your doctor may have different goals for the visit. For example, your doctor may want to just check your blood pressure, while you may have worries about possible surgery.

Many things can get in the way of helpful communication; emotions, communication style, different goals and lack of time all work against us. When emotions are high, logic is low. If you find that your emotions are interfering with your visit, explain this to your doctor. Try taking a moment to reflect on what you want to say and try again.

Lastly, you may feel that you know more about certain aspects of Porphyria than your physician. Major medical journal articles are usually best accepted than internet articles.

After the Visit 

Often patients have questions they forgot to ask.  If it is urgent, call the office right away. Otherwise, check the educational materials to see if the question can be answered there.

If you still don’t have the answer, call your doctor.  However, it is best to have the question clearly written.  Be aware that the doctor may not be able to answer your call until the end of the day, but a nurse or physician’s assistant may be able to help earlier.

Rare Disease Tool Kit