If you’ve been diagnosed with ATTR-CM (transthyretin amyloid cardiomyopathy), you may wonder if exercise is safe or even possible. ATTR-CM, also called amyloidosis, is a rare type of heart failure. When you find out you have it, you’ll want to stay as healthy as you can without doing anything that might make your condition worse.
As long as you have the right evaluation and guidance, there’s a good chance you can exercise. That’s important, because exercise improves your stamina, strength and confidence.
You’ll need an individualized plan designed for the way your heart functions. “Heart failure specialists can use cardiopulmonary exercise testing (CPET) to design safe, effective exercise programs for people living with ATTR-CM,” said Anusha Sunkara, MD, a cardiologist and heart failure specialist with Banner - University Medicine.
Why ATTR-CM makes it hard to plan exercise
ATTR-CM happens when amyloid proteins build up in the heart muscle. This buildup makes your heart stiff and less flexible. It’s harder for your heart to stretch and contract normally and fill and pump blood properly.
Standard heart failure exercise guidelines don’t always apply, because the condition is different for everyone:
- For some people it’s mild, while others have more severe disease.
- Many people have irregular heart rhythms, like atrial fibrillation or ventricular tachycardia.
- Some people have chronotropic incompetence, which means the heart rate doesn’t rise enough during exercise. This can make stamina low, so physical activity feels harder than expected.
- Because amyloidosis can also affect nerves, muscles and joints, you could have balance or coordination issues that make physical activity challenging.
Your health care providers need to design your exercise program around your heart’s abilities and your body’s needs.
The gold standard: CPET testing shows what’s safe
Cardiopulmonary exercise testing (CPET) shows what level of activity is safe for you. It details how your heart, lungs and blood vessels work together when you’re exerting yourself. It’s like a detailed stress test that shows how your body uses oxygen when you’re exercising.
“CPET helps us measure cardiac performance,” Dr. Sunkara said. “It shows your capacity to do work, the ideal heart rate for exercise and how long it’s safe to sustain activity.”
During CPET testing, you walk or pedal a stationary bike while wearing specialized breathing equipment. The test tracks:
- Your true exercise capacity: How much work your heart can handle
- Safe heart-rate zones: Where exercise is helpful without strain
- The aerobic threshold: The point where exercise becomes less safe
- Chronotropic response: How well your heart rate increases with effort
With this precision, your care team doesn’t have to guess. They know the heart rate you can work at and for how long. And they have a better idea of whether adjusting your medication or using a specialized pacemaker might help your heart respond better to activity.
Your personalized exercise prescription
After testing, your care team creates a plan built around what your heart can do safely, taking your body, mind and lifestyle into consideration.
- Walking: For most people, regular walking is a great choice for building endurance and supporting circulation.
- Aerobic activity: You’ll want low- to moderate-intensity exercise that uses oxygen efficiently and keeps your heart rate in the right range for you, based on the CPET.
- Light resistance training: Lighter weights with higher repetitions can help strengthen muscles safely.
- Flexibility and stretching: These activities are especially important if you have joint or nerve symptoms related to amyloidosis.
The plan will also factor in any other health conditions you have, and your preferences. “We can recommend exercise variations and accommodations to suit anyone,” Dr. Sunkara said. “Really, any activity you like to do and will do regularly is what we select.”
Your exercise prescription evolves as your symptoms, test results or treatments change. You and your team will work together to adjust your ATTR-CM exercise rehabilitation plan.
Key safety principles
In ATTR-CM exercise rehabilitation, you want to:
- Stay in your aerobic zone, which is low- to moderate-intensity exercise where your body uses oxygen as fuel. High-intensity (anaerobic) exercise could overtax your heart.
- Start slowly and, as you get stronger, exercise for longer periods of time before you add intensity. “If you haven’t exercised in a while, slow-and-steady helps you build tolerance and persistence,” Dr. Sunkara said.
- Monitor your heart rate and how you feel during exercise. You should finish feeling energized, not exhausted.
- Listen to your body and adjust based on how you feel.
Health monitoring during sessions
“We pay close attention to how well you tolerate exercise,” Dr. Sunkara said. During supervised sessions in a heart failure exercise program, your team may monitor your:
- Heart rate and rhythm, with ECG
- Blood pressure before, during and after exercise
- Breathing patterns and the way you use oxygen
Red flags that mean you should stop immediately
These symptoms mean you should end your exercise session right away and let your care team know what’s going on:
- Chest pain or pressure
- Sudden dizziness or feeling faint
- Severe shortness of breath
- Palpitations or irregular heartbeat
The team approach: Coordinated care for complex needs
To exercise safely when you have ATTR-CM, you need a team by your side. Banner’s heart failure program includes:
- Advanced heart failure and transplant cardiologists who oversee your medical care and make sure you take the right medication
- Exercise physiologists who perform the CPET testing and develop your personalized plan
- Specialists in ATTR-CM exercise rehabilitation who guide your supervised sessions and track your progress
Team members communicate, adjust your program, monitor your progress for improvements and watch for warning signs.
If your ability to exercise gets better, that’s a sign that your treatments are working. If not, your team may want to take another look at your treatments or medications.
Taking the next step: What to expect
Here’s what your path may look like:
- Meeting with an advanced heart failure specialist
- CPET testing to see how your heart performs
- A customized exercise prescription based on your test results
- Supervised exercise sessions so you’re safe, comfortable and confident
Exercise won’t cure ATTR-CM but it can improve how you function and your mood and overall well-being. You may find you feel more energetic, sleep better and have more independence after you start an ATTR-CM exercise rehabilitation program.
Ready to explore safe exercise options for ATTR-CM?
The Banner heart failure program helps you move safely, gain strength and rebuild your quality of life. Contact a heart expert at Banner Health to learn how specialized cardiac rehabilitation for ATTR-CM and CPET testing can help.
