When I was diagnosed, I was put on some drugs to maintain my heart health – a medication to manage my blood pressure and a statin to lower my cholesterol. But that wasn't enough. Eventually, I was put on a type of drug called a TTR stabilizer. It helps to prevent protein from building up in your heart. I'm also on a drug known as a TTR gene silencer. It helps to treat both my cardiomyopathy and polyneuropathy.

Since ATTR-CM can cause heart failure, you may need to adjust your lifestyle. Your doctor may want you on a low-sodium diet, and they may have you closely monitor your fluid intake. Daily exercise, even just short walks, will help to keep your heart strong, too.

Every treatment comes with possible side effects. I was put on a heart rhythm drug at one point, and I had to cut my dose in half because my blood pressure dropped dramatically. Ask your doctor to go over potential side effects for every medication you're on. They should also explain to you what to do about them.

The cost of some of the ATTR-CM medications is jaw-dropping. The transthyretin stabilizer I'm on, for example, has a list price of about $268,000 each year. Your insurance company will most likely cover some or all of the cost. But if your copay is still very expensive, your doctor can work with you to help make treatment more affordable.

Your doctor will want to know how you feel to help gauge how well the current treatment is working. If you have hereditary ATTR-CM, let them know about other family members, too. My brother passed away from an unexpected heart attack in 2023. Since I had recently developed atrial fibrillation around that time, they suggested I have an implantable cardioverter defibrillator (ICD) placed in my chest to protect against sudden cardiac death.

Most people with ATTR-CM want to improve their symptoms, boost their quality of life, and live for as long as they can. But your doctor can't create the best plan for you if they don't know your goals. Some people want a more aggressive approach, like moving as quickly as possible to a heart transplant. Others, like me, prefer to be more cautious.

Your doctor will want to know about any other treatments you've been on, not just to treat your ATTR-CM, but also other heart-related conditions such as high blood pressure or cholesterol. You should also let them know about any prescription or over-the-counter medications you take, along with supplements. This will help prevent drug interactions.

Your mental health is important, too. People often feel depressed or anxious after a diagnosis of ATTR-CM. Your doctor can refer you to a therapist or social worker if you need more support.

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