You want to get a good explanation of ATTR-CM and how it will impact your body – and your life. The more detailed a description of the condition that you get from the start, the more prepared you'll be to deal with it over the coming weeks, months, and years.

ATTR-CM happens when a protein called transthyretin that normally circulates in your blood builds up in your heart, nerves, and other parts of your body as amyloid fibrils. When it builds up in your heart, it’s harder for your heart to do its job. There are two different types: hereditary ATTR-CM (hATTR-CM) and wild-type ATTR-CM (wATTR-CM).

This is an important question because ATTR-CM can often hide from plain sight for a number of years. I developed carpal tunnel – an early symptom of ATTR-CM – in 2006, but I wasn't diagnosed with ATTR-CM until almost 15 years later. This is also a good way to ease into a discussion of what sorts of tests you may need to get a full picture of your ATTR-CM.

ATTR-CM can be very aggressive if it's left untreated, so you'll want to discuss medication options. There are three drugs that are approved to treat the heart problems that can come with ATTR-CM. There are also several drugs available to help treat polyneuropathy, or nerve damage from hereditary ATTR. These can all slow the progression of ATTR-CM and make symptoms more manageable.

ATTR-CM tends to set in during your 60s, which is often your golden age. When I was diagnosed, I was looking forward to retiring and spending my days traveling and spoiling my grandchildren. Then ATTR-CM happened and took over my life. You'll still be able to do some of the things on your bucket list, but probably not all of them. Your doctor can help to paint a realistic picture.

Your doctor will want to know how you've been feeling. It's important to let them know about all your symptoms, even if you're not sure that they are related to ATTR-CM. For example, I sometimes had GI problems, which, it turned out, were related to the condition.

Your doctor will want to know how your ATTR-CM affects you on a daily basis. Do you cough a lot from fluid buildup in your lungs? Does heart failure make it hard for you to exercise? Does tingling and weakness in your hands from neuropathy make it more difficult to do daily activities?

If your answer is yes, your doctor will probably want to order genetic testing to see if you have the hereditary form of ATTR-CM. Some variants are more common in people who have Irish ancestry, and others are more common among Black people. The most common hereditary variant in the United States, for example, occurs in 3% to 4% percent of all Black people.

There are specific tests your doctor may do in their office, like a six-minute walking test to figure out how strong your heart is. And there are also blood and imaging tests they may want to order. If you've already had some of them done, they will want to see the results.

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