Being diagnosed with amyloidosis can be a scary, confusing, and anxious time. This is understandable as not many people have heard of amyloidosis before. We’re here to help you navigate the early days following a diagnosis of amyloidosis, though your first way points should be the medical professionals and doctors treating you.
Questions to ask after getting a diagnosis
- Can you explain my pathology report (laboratory test results) to me?
- What organs, tissues, and/or parts of my body are affected?
- How does this type of amyloidosis usually progress? Is it possible to slow down amyloidosis? Is it curable?
Questions to ask about choosing a treatment
- What are my treatment options?
- Can my symptoms be controlled with medication alone?
- What clinical trials are available for me? Where are they located, and how do I find out more about them?
- What treatment plan do you recommend? Why?
- What is the goal of each treatment? Is it to eliminate the underlying disease, help me feel better, or both?
- Who will be part of my health care team, and what does each member do?
- Who will be leading my overall treatment?
Questions to ask about managing side effects
- What are the possible side effects of each treatment, both in the short term and the long term?
- How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
- Could this treatment affect my sex life? If so, how and for how long?
- Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before treatment begins?
- If I’m worried about managing the costs of care, who can help me?
- What support services are available to me? To my family?
- If I have questions or problems, who should I call?
Questions to ask about planning follow-up care
- Are there any signs and symptoms I should watch for?
- What long-term side effects or late effects are possible based on the treatment I received?
- What follow-up tests will I need, and how often will those tests be needed?
- How do I get a treatment summary and follow-up care plan to keep in my personal records?
- Who will be leading my follow-up care?
- What support services are available to me after treatment has finished? To my family?
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