Living With ATTR-CM: Coping and Expectations

Finding out that there’s something wrong with your heart can be terrifying, no matter how big or how small the issue. When the something in question is a rare condition like transthyretin amyloid cardiomyopathy (ATTR-CM), there can be an extra layer of uncertainty. If you don’t understand what’s happening to your body, it can be hard to imagine what the future holds.

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None of us have a crystal ball. But we can say this: Diagnosis isn’t destiny. People with ATTR-CM are living longer, healthier lives than ever before.

What to expect with ATTR-CM

We asked cardiologist Mazen Hanna, MD, co-director of the Amyloidosis Center, what to expect if you’ve been newly diagnosed with ATTR-CM. He shares his insights, along with some resources to help you learn more.

Get personalized information from your doctor

It’s probably the first question that pops into your head when you find out you have a serious heart condition: “How long do I have?” But looking up life expectancy information online isn’t always a good idea.

“Unfortunately, there’s a lot of misinformation about ATTR-CM on the internet,” Dr. Hanna says. In fact, most of the information you’ll find is just outdated.

“People end up reading this old, outdated information that doesn’t necessarily describe their medical situation. And it creates a lot of anxiety,” he notes. “We now have effective treatments that significantly improve life expectancy.”

It’s understandable to worry about the impact ATTR-CM will have on your life expectancy. If it’s a question that’s keeping you up at night, Dr. Hanna recommends asking your doctor about it. Although they can’t give a definitive answer, various tests can give a general idea about prognosis. Your provider can also help you understand what your symptoms and test results are telling them about your long-term heart health.

What treatment options are available?

ATTR-CM treatment has come a long way in a short time.

“When I started in this field, we had nothing — no treatments at all,” Dr. Hanna remarks. “Thanks to the amazing people who enrolled in clinical trials, we now have two FDA [U.S. Food and Drug Administration]-approved medications for ATTR-CM, along with a third that will go in front of the FDA very soon.” So far, the data show these treatments make a notable difference in quality of life and prognosis for people living with ATTR-CM.

And that’s not all. According to Dr. Hanna, there are lots of other clinical trials that are either already underway or in the planning stages.

“This is an explosive field of research. And none of us are satisfied with what we have now,” he adds. “The prognosis for ATTR-CM is much better. And it will continue to improve.”

ATTR-CM clinical trials

As you can tell, research on cardiac amyloidosis is moving at a blistering pace. So, one of the best things you can do — both for your own health and for the next generation of people with ATTR-CM — is join a clinical trial.

“Participation in clinical trials is what will advance this field forward,” Dr. Hanna states. “And being involved in a clinical trial gives you a chance to get a therapy that could be very effective but isn’t yet approved.” And after the trial ends? Most clinical trials make successful treatments available to participants for a while after the randomized portion of their research ends.

So, how do you get into a clinical trial, exactly? You do it by working with a care team that has its finger on the pulse of ATTR-CM research. For rare conditions, not just any doctor will do.

“It’s very important for patients to seek out physicians with significant experience with ATTR-CM,” Dr. Hanna emphasizes. “Working with a specialist helps ensure you have access to both the right treatments and any clinical trials you’re a good fit for.”

If your current care team doesn’t include any amyloidosis experts, there are several support groups that can help you connect with the team you need. More on them in a bit.

ATTR-CM lifestyle changes

It’s hard to even say “transthyretin amyloid cardiomyopathy,” much less imagine how it will impact your day-to-day. What kinds of changes will you need to make?

Focus on healthy eating (and drinking)

When you’re living with ATTR-CM, what you eat and drink becomes more important than ever before.

ATTR-CM can sometimes cause heart failure. One of the common side effects of heart failure is fluid buildup. In fact, your provider may prescribe diuretics (water pills) to help prevent water retention.

In addition to taking your medication, Dr. Hanna says you’ll need to watch your sodium (salt) intake. How much sodium you should shoot for — and how much water you should drink — depends on your overall health. Talk to your cardiologist to get personalized recommendations.

In addition to avoiding salty foods, try to maintain a heart-healthy diet with ATTR-CM. That means:

Eating lots of fresh, minimally processed foods
Avoiding added sugar
Getting plenty of fruits and vegetables
Getting protein from plant-based sources like beans, tofu and nuts
Choosing lean animal proteins like fish, shellfish and skinless poultry, instead of meat that’s high in saturated fat
Sticking to low-fat dairy options
Minimizing alcohol, especially if you’re on a blood thinner

Get (and stay) moving

If you’re living with ATTR-CM, you may find it difficult to get the physical activity you need. That’s especially true if you’re dealing with shortness of breath (dyspnea), deconditioning, fatigue and more.

But any steps you can take safely will be steps in the right direction.

“We encourage daily walking and exercise,” Dr. Hanna says. “Many people with ATTR-CM and their families have to make adaptations to do activities they enjoy. We want them to live their life. And trying to stay moving as much as possible is key.”

If you aren’t sure what kind of physical activity is safe for you, talk to your provider. You may need to work with a physical therapist or cardiac rehabilitation specialist to build up your strength, balance and stamina.

Protect your mental health

If you’ve not worked with a therapist or attended a support group before, you might not see the benefit of starting now. But Dr. Hanna does.

“I think mental health is important to address in anyone living with a chronic disease,” he encourages. “Having to deal with daily symptoms can be challenging. So, I always recommend that people with ATTR-CM seek assistance with their mental health.”

An ATTR-CM diagnosis can be life-changing. And some of the symptoms, like shortness of breath, can be downright scary. Having somebody to talk to can only help you as you navigate your “new normal.”

Know your resources

If the first time you heard of ATTR-CM was the day you were diagnosed, you probably feel a little in over your head. You may ask your doctor a lot of questions, only to think of 10 more the minute you leave their office.

It happens. But Dr. Hanna reiterates that it’s best to resist the urge to turn to the internet for answers.

“In most cases, an internet search will cause unnecessary anxiety,” he says. “It’s better to get information that’s actually relevant to you from your physician. I understand people need to do their own research at times, particularly if they have to wait to see their provider. Just know that ATTR-CM is a treatable condition with more and more emerging therapies. The prognosis is much better and continues to improve.”

If you want good information and support in between doctor visits, he recommends checking out the following organizations:

“The individuals behind these organizations have dedicated their lives to people living with amyloidosis,” Dr. Hanna explains. “They want you to have the knowledge you need to advocate for yourself — and to never feel alone in this journey.”

Care for the caregivers

Protecting your mental health is key to living your best life with ATTR-CM. It’s equally important for the people that support you day in and day out.

“I think caregivers are heroes,” Dr. Hanna enthuses. “I can’t tell you how many devoted caregivers I’ve seen over the years that have continually advocated for their loved ones. They make a tremendous difference. We need to acknowledge and help them any way we can.”

Dr. Hanna encourages caregivers to attend support group meetings. They may also need to work with a mental health provider. After all, they can’t help you if they’re burnt out.

He also notes the importance of learning about respite care, saying “It’s important caregivers take some time to care for themselves.” Self-care allows your loved ones to be fully present for you in the moments that matter most.

So many reasons for hope

Being diagnosed with a rare cardiac condition like ATTR-CM can be scary. And it’s OK to be afraid of what the future holds. But there’s reason to be hopeful, too.

Science and medicine are advancing. New treatments are becoming available. Advocacy groups are beacons of strength and support. And your care team and caregivers have your back. No one wants to be ill. But when it comes to ATTR-CM, the outlook’s only getting brighter with time.

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