If you have been diagnosed with transthyretin amyloid cardiomyopathy (ATTR-CM), it means that you have likely been experiencing symptoms related to cardiac disease, such as an irregular heart beat, shortness of breath, fatigue, and leg swelling. You may have been searching for a diagnosis for some time, and left many appointments without answers.
Now that you have a diagnosis, here are some tips to make the most of visits with your care team.
Prepare a list of questions
Many patients turn to the internet for information and answers about their condition. Instead of doing so, you can prepare a list of questions to ask your doctor directly. This is much more valuable. It gives you answers from an expert, and it gives your doctor a sense of your understanding of your disease as well as your concerns, which can impact decisions about your care.
Read more about ATTR-CM signs and symptoms
Don’t be afraid to ask hard questions. If you have undergone imaging studies on your heart, don’t be afraid to ask about anything you don’t understand about the results, especially if there are terms that are unfamiliar to you. You may also want to ask questions about the amount of physical activity you can safely participate in, as well as the state of your cardiac health. You may want to ask if your condition will impact your work or even social life. Be transparent. Remember that your doctor is here to help you navigate through this disease.
Ask about medications and side effects
There are a number of therapies available for ATTR-CM. If your doctor has prescribed you a medication and you have any uncertainties about how to take it, it’s a good idea to get clarification from your doctor. It’s also important for you to understand the potential side effects of any drugs so that you won’t be too alarmed if you experience them.
If you are unsatisfied with the results of your current treatment course, share your concerns with your doctor. If you find the side effects of your currently prescribed medications to be overwhelming, let your doctor know — alternative medications may be available.
As ATTR-CM progresses you may experience new symptoms affecting the nerves, which can happen due to amyloid accumulation across the nervous system. If that happens, make sure to let your doctor know, as additional therapies may be needed.
Don’t be afraid to ask for help
A diagnosis of ATTR-CM can be life-altering. Many of the symptoms you experience may interfere with your daily life. You may find yourself feeling more depressed or anxious than usual. If you experience any of these concerns, let your doctor know. Remember: your mental health and your quality of life matter. Your doctor may be able to refer you to a psychologist who can help you cope with this major life change. They can also refer you to an occupational therapist who can help you learn new ways of navigating daily tasks. Understand that help is always available.
Remember your doctor is here for you
It is important that you develop a trusting relationship with your doctor, as your doctor will be overseeing your care. Remember that there are no silly questions; anything that is on your mind is worth discussing with your doctor. From your symptoms to treatment to side effects to worries about how your disease is impacting your life, your doctor is here for you and will work with you to achieve the best outcome possible.
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