The complexity of heart failure makes its outcome hard to predict. Some patients remain reasonably stable for years on a standard medical regimen. Others slowly slide downhill, despite aggressive treatment with advanced medications and mechanical therapies.
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Keeping someone with heart failure out of the hospital and symptom-free is a time-consuming, frustrating task. If you have heart failure, you are more likely to be satisfied with this process if you work closely with your doctor toward a common goal. This requires letting your doctor know your priorities as early as possible in the treatment process.
“I ask every new patient what they expect and hope from the appointment,” says heart failure specialist Maria Mountis, DO. “It’s very important to talk about this, because it is easier for me to make recommendations when I know what the patient wants.”
You may assume that heart-failure patients will do anything possible to live longer, but this is not always the case. Many simply want to feel better. Sometimes that means rejecting or discontinuing a recommended therapy.
“If you have side effects from your medications and would rather not take them, I can understand,” says Dr. Mountis. “If you don’t want to be evaluated for an advanced therapy like a mechanical heart pump or a heart transplant, I can respect that decision after we have discussed the pros and cons. Our conversation will then shift to what you can expect to happen from that point on.”
Some patients simply want to know what is happening to their heart and what options they will have as their condition worsens. Having this information helps them to make informed treatment choices. “Setting expectations can be a positive, empowering experience,” says Dr. Mountis.
Educating patients about their disease and upsides and downsides of treatment takes time — something Dr. Mountis calls “a precious commodity in short supply.” For this reason, many patients turn to the internet for information. Unfortunately, many gather misinformation that prevents them from making well-informed decisions. Dr. Mountis feels that taking the time to clear up misconceptions is well worth the effort.
“Patients who have been properly educated may be in a better frame of mind and open to more treatment ideas,” she says.
If you are hospitalized for heart failure more than twice a year, you should consider seeing a cardiologist with special training in heart failure. Most cardiology practices have one.
“Heart-failure specialists are familiar with the complications associated with advanced heart failure and are tuned in to the nuances of breathing, sleeping and other issues,” says Dr. Mountis. “They are also likely to have longer appointment times and can spend more time with you.”
One or two consults may be all you need to get back on track.
“Sometimes we only need to adjust a patient’s medications before sending them back to their regular doctor,” she says. “However, it’s always good to have another set of eyes and ears on you.”
It’s not always easy to know what to ask for in your heart failure care. Here Dr. Mountis offers her advice:
This article originally appeared in Cleveland Clinic Heart Advisor.