New to Amyloidosis

If you’re feeling unsure or uneasy about your doctor’s advice, it’s completely okay to ask for a second opinion. Even if you’re just curious about other options or want to hear a different perspective, you have every right to do so. Lots of people get second opinions, it’s a normal part of taking care of your health. You won’t be the first person to ask for one.

Understanding your health insurance is an important part of being your own best advocate. Knowing what your plan covers — and what it doesn’t — can help you make confident choices about your care. It might feel a little overwhelming at first but taking a few minutes to learn the basics can make a big difference. You’re not alone in this, and the more you know, the more in control you’ll feel to get the care you need.

• Review the details of your policy — deductibles, pre-authorizations, covered medications, etc. It is important to review your plan details and reach out to your insurance company with any questions.
• Understanding what your policy covers is an essential step to do before you call your insurance company to inform them of your diagnosis. If you have specific concerns about your policy, make sure to note them before the call so you can ask your insurance company up front.
• After you call your insurance provider, it is good practice to note some key points from your discussion for your records (i.e., the date, the representative you spoke with, and what you discussed).
• There may be times when you need to appeal a decision that your insurance company makes around your care. For more information on preparing an appeal, visit the Patient Advocate Foundation.

If you don’t have insurance, it is important to look at your options as soon as possible. You can begin by contacting your state’s Department of Insurance, an amyloidosis center social worker or ARC’s Patient Support line. These resources will be able to outline assistance programs and other ways to help you find other forms of health care coverage.

Having the right people by your side can make a big difference. Your healthcare team might include your primary care doctor, amyloidosis specialists, nurses, pharmacists, and even therapists and social workers, anyone who helps support your health and well-being. It’s okay to ask questions, speak up, and make sure you feel comfortable with the people on your team. You deserve care from people who listen to you, respect you, and work with you to meet your needs.

The following team of doctors may be treating your amyloidosis:

• Cardiologist (heart)
• Hematologist (blood disorders)
• Neurologist (nervous system)
• Gastroenterologist (GI tract – stomach, small and large intestine)
• Pulmonologist (lungs)

It’s important that you and your healthcare providers work together. Here are a few tips to help you with your appointment:

• Be patient when it comes to scheduling an appointment, you may find that you need multiple appointments for testing, follow up, and treatment planning.
• Keep track of your symptoms. Be specific and write it down. Start a journal to share with your doctor.
• Write down notes about your medical history. This includes blood work, imaging studies, biopsy slides, and any other tests you have completed. It is important that the doctor has access to all the records and tests performed leading up to and after your diagnosis. These tests will help them make an informed recommendation for your treatment plan.
• Put together a list of your medications to bring to your appointment.
• Be prepared! Appointments are short – write down your questions and bring them with you.
• Bring paper and pen to take notes during the appointment or ask if you can record the meeting on your phone.
• If you’re given a prescription, ask for medication sheets with more written info on the treatments to look at when you get home.
• You may also want to have a supportive friend or family member come with you to take notes or help navigate appointments and testing. Medical appointments can be overwhelming, and it never hurts to have someone else with you.
• If you don’t understand your diagnosis, treatment options, or anything the doctor suggests, ask them or a nurse to explain it in a clear, simple way until you feel comfortable.
• Confirm your next steps. Do I need any testing? If so, what kind? What will it involve? Will I start taking medications? When is my next appointment?
• Create a support team. Your friends and family can be an important part of your care team. Provide resources and information so that your friends and loved ones can better understand what you’re going through.

Find out who is coordinating your care when working with a variety of specialties. You want to have someone manage the big picture and make sure nothing falls through the cracks.

• What type of amyloidosis do I have, and what treatments are available?
• How can we manage my symptoms, so my overall health is better?
• Are there any clinical trials that might be good for me?
• What coping resources or support can help me manage my disease and my emotions?
• How can I best get my questions answered between office visits?

Throughout this journey, remember to take care of yourself by getting enough rest, eating healthy and seeking support from a friend, family member or professional.

Do Research — Learn about amyloidosis and potential treatments before your appointment. A great place to start is on our website.

Be Prepared — Make a list of questions and concerns to ask your doctor, and bring a list of your current medications, tests, and other medical history.

Speak Up — Don’t hesitate to express your concerns and ask questions to make sure you fully understand your diagnosis and treatment plan.

Take Notes — Write down key information from your doctor, including diagnoses, treatment plans, and follow-up instructions.

Know Your Insurance — Get to know more about your health insurance coverage to avoid unexpected costs.

Follow Up — Contact your doctor or other healthcare provider if you have questions after your appointment or need to better understand anything that was discussed.