12 Self-Care Tips for Transthyretin Amyloid Cardiomyopathy

With transthyretin amyloid cardiomyopathy (ATTR-CM), an abnormal protein called amyloid builds up in your heart over time. Symptoms are similar to heart failure, meaning you might have trouble doing some of the things you used to do.

For example, you may experience chest pain, coughing and wheezing, fatigue, palpitations, shortness of breath, or swelling. “Earlier on in the disease, patients may have primarily [heart] rhythm problems, so they may have palpitations or atrial fibrillation — an irregular heart rhythm — that may bring them in to see their doctor or to the ER,” says Martha Grogan, MD, a cardiologist at Mayo Clinic in Rochester, Minnesota.

Later, the most common symptom is difficult or labored breathing, especially with exertion. In more severe cases, you may even have trouble breathing at rest. You might also notice fluid buildup in your abdomen or legs.

There is no cure for ATTR-CM, but your doctor will prescribe treatment to help you manage your symptoms. In addition to medication, a few healthy lifestyle habits can help you manage your disease and feel better.

1. Optimize Your Fluid and Sodium Intake

Most patients with transthyretin amyloid cardiomyopathy will be prescribed a diuretic, which helps the body clear out excess fluid. Depending on the diuretic and dose you take, your doctor might recommend reducing your intake of salty foods and maybe even liquids.

This is a controversial area, “because the real extremes of restricting salt and fluid can lead to low blood pressure and be hard on the kidneys, so it needs to be individualized,” says Dr. Grogan. “Patients are going to want to have a healthcare provider who understands heart failure and managing that fluid status.”

2. Weigh Yourself Every Day

Weighing yourself around the same time every day can help you catch fluid retention early. “Weight is a pretty good indicator of whether someone is retaining fluid,” says Grogan. “So, if someone suddenly goes up by two or three pounds, two days in a row, and they didn’t eat a huge amount, then usually that’s a sign that they’re accumulating fluid.”

Some people can retain 10 or more pounds of fluid without noticing, if they’re not weighing themselves regularly. If the numbers on the scale suggest you’re retaining fluid, talk to your doctor, who might recommend an intervention, such as increasing your diuretic dose.

3. Wear Support Stockings

If your legs are swollen, consider compression socks or stockings, which can help send fluid back toward your heart. In some people, this works well enough that a healthcare provider can avoid increasing the dose of a prescribed diuretic, says Grogan.

4. Shore Up Your Diet

It’s smart to follow a heart-healthy diet. According to the American Heart Association, this means eating fish and poultry (but skip the skin); legumes and nuts; low-fat dairy; a variety of fruits and vegetables; and whole grains. In addition, you should limit or avoid red meat; saturated and trans fats; sodium; sugar-sweetened beverages; and sweets.

5. Exercise to the Extent You’re Able

Sometimes, the symptoms of ATTR-CM make exercise difficult or even unsafe. But, once you and your doctor have found the right treatment plan to reduce your symptoms, exercise is recommended to combat the deconditioning this disease can cause, says Grogan.

You may need supervised cardiac rehab, and many people with ATTR-CM benefit from light strength training to build and maintain muscle mass. “This kind of chronic disease can kind of eat away at muscle,” she says. “So, if a person can at least try to battle that and do some light strength training, that will be more efficient for the heart to pump to muscle instead of pumping to flab.”

Let your doctor know how far you can walk and what kinds of activities you’re able to do every day. Together, you can figure out the right program.

6. Check Your Bad Habits

Smoking is definitely a no-no. “Smoking doesn’t have a specific role in amyloidosis, to our knowledge, but it will put patients at higher risk of a heart attack and stroke,” says Grogan.

Heavy drinking is also a bad idea, but drinking alcohol in moderation may be okay. It depends on which medications you’re taking, says Grogan. For example, alcohol can be particularly dangerous for patients taking blood thinners. Ask your doctor what amount of alcohol use, if any, is safe for you.

7. Watch for Snoring and Other Signs of Breathing Trouble at Night

People with ATTR-CM may have an increased risk of sleep apnea, a disorder that keeps you from breathing in enough oxygen at night. That’s a problem for anyone, but especially patients with heart trouble. “Low oxygen levels are hard on the heart,” says Grogan.

“The heart is already not functioning the way it should,” she says. She recommends asking your doctor about sleep apnea if you see any signs, including difficulty sleeping, snoring loudly, or “if a family member notices that at night, [you] might be breathing very quickly and then might just stop breathing for a certain period of time.”

Your doctor can test you for sleep apnea. If you do have it, treatment is available.

8. Tell Your Doctor if You Can’t Lie Down

Some people retain so much fluid in their legs that they feel uncomfortable when they lie down at night. This is because fluid comes back from the legs and pools in the lungs, causing shortness of breath.

“Some people will sit up in a recliner all night or prop themselves up with lots of pillows or wake up in the middle of the night, gasping for breath — a sign there’s too much fluid in the lungs,” says Grogan. “When they sit up, gravity helps pull that fluid down to the lower part of the lungs, so they can get more oxygen in the upper part.”

If this is happening to you, tell your doctor, who might be able to adjust your dose of diuretic to minimize fluid buildup and help you sleep more soundly.

9. Check for Changes in Blood Pressure

Check your blood pressure regularly, and let your doctor know if you notice it’s lower than usual. Often, with heart problems, doctors look for high blood pressure, but transthyretin amyloid cardiomyopathy is different.

“In this condition, usually their blood pressure is going to go low, not high, so we’re watching more for low blood pressure, not high blood pressure,” says Grogan.

10. Watch Out for Hand and Foot Problems

Some patients with ATTR-CM also have neuropathy, or nerve problems, in their hands and feet. Let your doctor know if you notice numbness or pain in your extremities.

11. Reach Out to Reduce Stress

Becoming knowledgeable about this disease and its treatment options could help reduce your anxiety, Grogan suggests. Consider joining a support group to connect with other patients and families to learn more. Check out Amyloidosis Support Groups, the Amyloidosis Foundation, and the Amyloidosis Research Consortium.

12. Ask Your Doctor About Symptom Treatment Options

If you are retaining fluid, can’t lie down, or have pain, difficulty doing regular activities, or trouble sleeping, talk to your doctor. They can change your medication dosage to help relieve your symptoms.

Your doctor may also prescribe medications that can help by stabilizing the transthyretin protein to reduce its chances of breaking up into amyloid proteins that can then infiltrate your heart.