Heart failure, as the almost 6 million Americans with it know, doesn’t mean “failure.” It doesn’t mean “stopped.”
If you have the condition, it may mean a new lifestyle and a new way of thinking. It means living with a serious, chronic disease.
The important word there: living.
“First of all, heart failure is an unfortunate and inaccurate term,” says Lynne Warner Stevenson, MD, the director of the cardiomyopathy and heart failure program at Brigham and Women’s Hospital. “It usually means that the heart is handicapped, not that it can’t function.”
No one will tell you that heart failure isn’t serious business. It’s certainly a tough pair of words to hear.
“All of the sudden you feel like your life has kind of fallen out from underneath your feet, and that you’re facing this big uncertainty,” Stevenson says. “But it’s not that your life has become uncertain. It’s always been uncertain.
“That doesn’t isolate [you] from all the people around you. Life is uncertain for everybody.”
You can live a productive, fulfilling life with heart failure if you follow a few steps.
1. Don’t become your disease.
It’s easy to get wrapped up in your heart failure and your personal struggle with it. But don’t let it define who you are or what you do with your life.
“Always keeping a positive attitude,” says Allison Durant, “is definitely key.”
Durant, 27, was diagnosed with heart failure and cardiac sarcoidosis, an inflammatory disease of the heart, when she was 23. She had a pacemaker implanted in her chest, and she deals with the realities of her condition every day.
She tries to keep a positive attitude, but when that gets tough, she reaches out to family and friends.
“I would definitely say surrounding yourself with good people makes it a little easier, people that understand kind of what you’re going through,” she says. “And finding a good support group.”
2. Take your medicine.
It may seem obvious, but with heart failure, it's crucial. The sooner you get a handle on it, the better.
Some of the medicines your doctor may recommend include:
ACE inhibitors. These relax blood vessels to keep your blood pressure low and reduce the load on your heart.
Beta-blockers. They lower your blood pressure and slow your heart rate.
Digoxin. It strengthens the force of the heart muscle's contractions and slows the heart rate.
Diuretics. They’re also known as “water pills.”
Angiotensin receptor blockers (ARBs). They also relax blood vessels and make it easier for your heart to do its job.
Isosorbide dinitrate and hydralazine. It relaxes blood vessels.
Sacubitril and valsartan. Also relaxes blood vessels, making it easier for your heart to pump blood.
These medications can also help you:
- Live longer
- Breathe easier
- Have more energy
- Get more active
- Have less swelling
- Stay out of the hospital
Durant says that every day she takes about five different medications. Every Saturday, she sits down in front of a pillbox marked with each day of the week and fills it with her daily medications. That’s it. She’s to the point now where taking pills is second nature.
3. Get involved with your health care team.
Talk to your doctors regularly. Durant has three of them -- a cardiologist, a sarcoidosis specialist, and a pacemaker specialist -- she sees every 3 months or so.
“Feeling comfortable with them is important,” she says, “and being able to trust them and know you’re getting the care you need.”
When she was first diagnosed, Durant kept a detailed account that she shared with her doctors -- how she felt at different parts of different days, and how her medications, her diet, and her exercise regimen affected her. Many doctors suggest you keep a journal and go over it with your medical team.
4. Realize you can’t do it all, but do what you can.
People with heart failure often have things like fatigue, lightheadedness, and shortness of breath. Rest when you need to, and get plenty of sleep. It can make a huge difference.
That doesn’t mean you have to stay in bed all the time. You just have to pick and choose what you can do and what you can’t on any given day.
“You need to continue to decide what’s important for you, to plan for that, to plan how you can do that,” Stevenson says.
“In general, people can do most of the things that are really important to them. They may have to give something else up. They’ll have to rest before and rest after an important event. But they can make almost any important event.”
Move around. Go for a walk. It’s important. You may have to start slowly. And you may tire easily. That’s OK.
No exercise for days or weeks at a time isn’t.
“The most important thing I’ve learned from sticking to an exercise program is to do it for all of the right reasons, and to make sure that I set achievable goals for myself,” Durant writes in her blog. “My health is my top priority and that is my motivation to keep exercising.”
Some people with heart failure may shy away from exercise or a trip away from home. “But if they have a day where they do too much, it’s not going to hurt their heart,” Stevenson says. “It’s not going to make their heart fail faster.”
6. Watch your sodium and your weight.
Too much salt in your diet makes you retain water, and that can put undue pressure on your heart. The American Heart Association recommends you get no more than 1,500 milligrams of sodium a day.
How do you do that?
- Stop adding salt to your food.
- Eat low-sodium versions of the foods you like.
- Pick foods naturally low in sodium, like fresh or frozen meats, eggs, yogurt, tortillas, and many fruits.
- Learn to read food labels.
Point out a quick weight gain to your doctor right away -- say 2 pounds in a day or 4 pounds in a week. That could be a sign that your heart failure is getting worse. Many experts recommend you weigh yourself every day (at the same time and in the same way), and keep an accurate log of any weight gain or loss.
Likewise, watch out for swelling, especially in your legs, ankles, feet, or hands. That could signal a buildup of fluids, another clue that your heart may not be working as well as it should.
Speaking of fluids, watch how much of them you have each day, including soup. Drinking glass after glass of water or green tea isn’t necessarily a good thing when your body is struggling to get rid of fluids.
Living with the condition is not easy. But remember: How you live with it is a choice.
“I think that what’s important is to make sure that there’s something else that you’re thinking about first [to do] ... and then the aspect of heart failure falls to the side of that, rather than starting out with the heart failure and then, whatever time is left, you do the important things,” Stevenson says.
“I’ve been doing this for over 30 years, and I continue to be amazed by the fact that how happy people are has very little to do with how severe their heart failure is.”