Preparing For Your hATTR Amyloidosis Appointment Checklist

When you have a rare and complex condition like hATTR amyloidosis, it’s a good idea to take time to prepare yourself for each doctor’s appointment. Think through your questions or concerns ahead of time. By making sure you’re clear about the goals of each visit, you’ll get the most out of the time you have with your doctors. 

With hATTR amyloidosis, clumps of faulty proteins can affect different parts of your body, including your nerves, heart, and other organs. You’ll likely have a team of doctors with different focuses, such as cardiology, neurology, and more. Check which doctor you’re seeing and what their specialty is. Think through any questions or issues you have that they may best help you with.

Think through any symptoms you’re having and whether you’ve had changes since your last doctor visit. Do you have concerns about how you’re feeling? Do you have questions about treatments? If you have lots of questions and concerns, make sure you list them in order of importance so that you can get to the most critical ones first.

Keep an updated list of any medicines or other supplements you’re taking. Make sure you’ve got your insurance information, too, and a list of all the doctors on your team. Keep any medical records you have together. By keeping these organized and easy to transport, you’ll be sure to have anything you may need to answer your doctor’s questions.

You may feel nervous or stressed about seeing the doctor. To make it easier on yourself, double check the details for each appointment well ahead of time. Make sure you’ve got the right date and time. Know how early they’d like you to arrive, the best route to get yourself there, and how long the drive should be. Plan to leave yourself plenty of time to park, find your way to the clinic, and get there without a rush.

If you think it would help, ask a friend or family member to come along with you. Let them know what you’d like for them to do to lighten your mental load. For example, they could remind you about any questions or concerns you’re forgetting. Or they could just listen carefully and take notes, so you have someone to talk it all through with afterwards as you prepare for your next steps.

A friend or family member also can help you pass the time while you wait to see your doctor. Along with your questions and records, pack some other basics to keep you comfortable and your mind occupied in case there’s a wait such as:

• Books
• Magazines
• Mind games
• Snacks
• Water
   

If you’re seeing a particular doctor for the first time, come ready with questions to help you get to know them and learn how to work with them best. Some questions to ask include:

• Would you like to review any information about my symptoms, treatment, or medical records?
• What are your goals for me and this visit?
• How do you like to work with your patients?
• How can I get in touch between visits if I have questions or concerns?
   

Think ahead of time about some general questions you can ask at certain times, such as if your doctor suggests a new treatment or therapy to try. For example:

• What are the goals of the new treatment?
• What side effects should I watch for?
• Will it interact with anything else I’m taking?
• Is there anything else I should know before making this change?
   

Prepare another set of questions that might be good to ask at the end of your visit, such as:

• Should I see you again and, if so, when?
• Do you have any other suggestions for me before my next doctor visit?
• Do you recommend I see any other doctors, therapists, or other providers?
• Is there anything else I should think about, such as a clinical trial?
   

If you’re seeing a doctor who doesn’t speak your first language, you may want to ask your doctor’s office for an interpreter. Even if you can ask or understand some things, it might be easier for you to ask certain questions or get the details you need with the help of someone who speaks your language. Don’t let a language barrier get in the way of your care.

hATTR amyloidosis can affect you in many ways. For example, it may come with symptoms including carpal tunnel syndrome, sexual issues, headache, seizures, and more.
If you’re struggling – even if you aren’t sure your symptoms are related to the condition –  jot it all down ahead of time and let your doctors know. Along with your other treatments, ask them for help to ease other symptoms.