Making the Most of Your Doctor’s Visit When You Have FAP

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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Managing your treatment and care when you have a rare disease such as familial amyloid polyneuropathy (FAP) can be challenging, especially if your care team hasn’t previously treated many patients with your disease. Here are five tips for making the most of your doctor’s visit:

Make a list of your concerns before the doctor’s visit

If you have concerns about new symptoms or side effects of your medications, make a list of them so you don’t forget anything. Have you noticed tingling or numbness? Have you felt dizzy? If you’ve noticed that you tire more easily than usual, or feel short of breath frequently, you should discuss them with your doctor.

As the disease progresses, your needs and symptoms will change. Many patients with a FAP diagnosis need to have their heart function tested, and they may require medication or other treatments. Many FAP patients will need a liver transplant. If you’ve undergone a liver transplant, you will need regular blood tests (usually once a month) to check your liver function. Discuss the results of your blood tests with your doctor.

Keep your records together

Organized medical records are important, especially if you rely on family members to help you get to and from appointments. Keep your medical records together, and take them with you when you have your doctor’s appointment so that you can update them.

You may want to keep your health insurance information in the same packet as your medical history. Also include a list of your current medications and supplements, the dosage, and treatment schedule. If you are following a special diet, keep your food diary with your medical information and bring it to your appointments.

Maintaining good records makes it easier for your doctor to notice symptoms and make changes to your treatment.

Have a plan for the doctor’s visit

Plan out your goals for the appointment. Do you need to discuss changes in medication? Do you have new symptoms that you need to make your doctor aware of? Have you read about new research on FAP and would like to hear your doctor’s opinion?

Write out your goals and bring that to your appointment. Make sure that everything you want to discuss is covered in the appointment.

Record your appointment

Keeping track of everything that happens in a doctor’s appointment can be difficult. You can easily miss details, especially if you have a lot to discuss. You may want to record the appointment so that you have the doctor’s exact instructions, but make sure you have your doctor’s permission before you start recording.

Update your treatment plan

At the end of your appointment, ask the doctor to review your treatment plan. This is a detailed file that contains information about your disease, and treatment options and their potential side effects.

Keeping your treatment plan updated and together with your medical information is important, especially if you have an emergency and need to be treated by someone who is not your primary physician.


Last updated: July 2, 2020


FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.