By Nancy Sweitzer, MD, as told to Regina Boyle Wheeler
Managing your heart failure well is key to getting the most out of your life. An expert health care team you trust can put you on the path to this all-important victory. The right combination of players can help you stop your condition from getting worse. That’ll help you spend more time doing what you want to do and less time feeling sick or being in the hospital.
What Is a Heart Failure Care Team?
It’s a group of doctors and other health care experts who work together to meet your individual needs. Your team may be made of different players than someone else’s with heart failure. But your core team could look like this:
Cardiologist. This is your heart doctor. They diagnose and treat your heart failure. They monitor your condition and will suggest other heart specialists if you need them.
Primary care doctor. Heart failure is usually not a person’s only health challenge. Other chronic conditions can happen as people age. Your primary care doctor manages these conditions and is responsible for your ongoing care.
Nurse or physician assistant. This is the quarterback of your team. They are the person who talks to you most often. This person can identify areas where your health is not the best it can be and why. Your nurse or physician assistant will ask you about your diet, medications, physical functioning, and other important things. They can discuss your condition with your cardiologist and refer you to other health care professionals that can help you stay on track. They also play a big role in educating you about your condition.
Nutritionist. This person can help you learn to prepare heart-healthy, low-salt meals based on your needs and desires.
Physical therapist. You may need help to set up a proper exercise routine you’ll stick with. A physical or occupational therapist can do this or assist with cardiac rehabilitation.
Mental health expert. Having heart failure can take a toll on your mental health. A counselor or psychologist can help you adapt to your “new normal” and help with anxiety, stress, or depression.
Social worker or case manager. Having a serious, chronic health problem often means expensive medical bills and insurance headaches. A social worker can help you wade through the red tape. They can also help with legal documents like advance directives.
Open Communication = Better Care
Your care team needs to know what’s going on outside of your visits. Be open and honest if you’re having a hard time quitting smoking or eating well, for example. Your care team can’t provide you with the best care if it doesn’t know what’s going on in your life.
Keep these things in mind:
You won’t shock us. The medical care professionals have heard and seen it all. Don’t be embarrassed to share.
Let go of the shame. You may blame yourself for your heart failure. Perhaps you didn’t control your weight, eat well, or exercise as well as you could have. We all struggle with these things. Almost no one on Earth eats well or exercises perfectly all the time. We’re all human. We have days when we are perfect and days when we are not. But your medical care will be better if your care team knows if you have more bad days than good.
You’re not a bother! We want to know what’s happening; you’re not bothering us. We come to work every day so you can live your best life. Call your cardiologist’s office if you have a hard time with some part of your care. It’s important to report some changes in your condition right away. These include:
- You get short of breath doing what used to come easily a month or a few weeks ago.
- You need to sleep in the recliner because you have a hard time breathing lying down.
- You’re putting on weight rapidly (more than 5 pounds in a week).
- Your feet, legs, or belly are swelling.
- You lose your appetite and stop eating.
- You have new or worsening dizziness or confusion.
If you have other symptoms and aren’t sure if they’re serious, call the office. The nurse will be able to tell you what you should do.
Share your goals. You are the best person to advocate for your wants and needs. Maybe your goal is to stand up at your daughter’s wedding or take that trip of a lifetime to Africa. It’s great when patients share goals and we work to try to make them happen. Make sure your goals are realistic, though. Perhaps skydiving isn’t the best thing for your heart.
Bring backup. Heart failure is a complex disease. Nowadays, patients go home with many pages of written instructions to wade through. It’s been shown that people do better when an active caregiver – a family member or friend – helps navigate the condition.
Different doctors have different capabilities when it comes to clear communication and patients only hear what they’re willing to listen to, as well. So an “extra set of ears” helps during office visits.
When to Call a Time-out With Your Team
A relationship with health care providers is very personal, and you need to feel comfortable. Chances are you’ll like some team members better than others. If you get along with most, maybe you should stick with the team. For instance, you might not love your doctor. But if the nurse can translate what the doctor says or does in a way you can understand, that might meet your needs.
But sometimes it’s better to shop around for a new team if the relationship just isn’t working for you. But your choices may be limited if you live in a smaller community.
Photo Credit: DigitalVision / Getty Images
American Heart Association: “Self-Check Plan for Heart Failure Management.”
Nancy Sweitzer, MD, PhD, FAHA, editor-in-chief, Circulation: Heart Failure; vice chair of clinical research, Department of Medicine, and director of clinical research, Division of Cardiology, Washington University, St. Louis, MO.
Society for Cardiovascular Angiography and Interventions: “Your Care Team if You Have Heart Failure.”