12 Self-Care Tips for Transthyretin Amyloid Cardiomyopathy

If you have transthyretin amyloid cardiomyopathy (ATTR-CM), a protein called transthyretin (TTR), which circulates in your bloodstream, becomes misshapen and forms abnormal protein deposits called amyloids. The deposits then build up in your body’s organs and tissues. When this happens in the heart, it can cause symptoms similar to heart failure, and you might have trouble doing some of the things you’d normally do.

For example, you may experience shortness of breath, coughing and wheezing, chest pain, fatigue, swelling, or palpitations. “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 and the director of the Cardiac Amyloidosis Clinic 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 transthyretin amyloid cardiomyopathy, but your doctor will prescribe treatment to help manage your symptoms. In addition to medication, a few healthy lifestyle habits can help you manage your disease and feel better.

1. Optimize Your Intake of Sodium and Fluids

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.” Bottom line: Talk to your doctor to get personalized recommendations about your fluid intake and the use of diuretics.

2. Weigh Yourself Around the Same Time Every Day to 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.”

3. Wear Compression Stockings

If your legs are swollen, consider compression stockings, which can help the fluid return back toward your heart. In some people, this works well enough that a doctor can avoid prescribing a higher diuretic dose, says Grogan.

4. Shore Up Your Diet

5. Exercise to the Extent You’re Able

Some people may need supervised cardiac rehab, and many will benefit from light strength training to maintain and build muscle mass. “This kind of chronic disease can kind of eat away at muscle, 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,” she says.

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.

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

“Low oxygen levels are hard on the heart, [which] is already not functioning the way it should,” says Grogan. “So we do recommend that if patients are having difficulty sleeping, if they have loud snoring, if a family member notices that at night they might be breathing very quickly and then they might just stop breathing for a certain period of time ... they should look into whether they have sleep apnea.”

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

8. Talk to Your Doctor if You Can’t Lie Down

Some people retain so much fluid in their legs that they’re uncomfortable when they lie down. When lying flat, that fluid comes back from the legs and pools in the lungs, which causes 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

If you check your blood pressure, let your doctor know if you notice that it’s lower than usual. Doctors often watch for high blood pressure with heart problems, 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 Problems With Your Hands and Feet

11. Reach Out to Reduce Stress

12. Talk to Your Doctor About Treatment Options to Manage Your Symptoms

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

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

The Takeaway

• There’s no cure for ATTR-CM, but adopting certain lifestyle habits can help you manage your symptoms.
• To start, try drinking enough fluids, following a heart-healthy diet, and being screened for problems such as sleep apnea.
• Always consult your healthcare provider to tailor these techniques to your specific needs.