Today, this behavior would be hopelessly inadequate, and most doctors display much more enlightenment about the appropriate management of heart failure. But as always, the patient’s best health insurance is a clear sense of what to expect from their doctors. That’s the only way to guarantee they get what they need.
Anyone diagnosed with heart failure should expect the following:
1)Insist on a thorough search for a definitive underlying cause. Especially important is to rule out undiagnosed coronary artery disease and valvular heart disease. (Up to 30% of heart attacks are unrecognized as significant events by patients at the time they occur, and may go unrecognized for years during routine doctor visits.) But you need to make sure that your doctor aggressively focuses on looking for all reversible causes of cardiomyopathy (as listed in the first article in this series), before further heart damage is done.
2)Insist on being placed on ACE inhibitors and beta blockers. These two drug therapies for cardiomyopathy are relatively recent, and in the case of beta blockers are counterintuitive and against what many doctors have been taught for years. But these therapies are now well-documented not only to improve symptoms, but also to reduce mortality with dilated cardiomyopathy. If your doctor refuses to attempt either of these therapies, you should get yourself another doctor.
3)Insist on being carefully instructed on how to monitor yourself to reduce the frequency of the periodic exacerbations of heart failure seen with dilated cardiomyopathy. These instructions should include careful dietary advice (preferably from a certified dietician), as well as instructions on how to monitor your weight, blood pressure and resting pulse. It is now felt that by looking for telltale changes in vital signs and weight, the exacerbations of heart failure that lead to periodic hospitalization can often be “headed off” by timely medication adjustments. Some insurance plans now offer “disease management” programs for patients with heart failure, in which such daily monitoring is accomplished with the help of nurses and other medical personnel. Patients enrolled in disease management programs appear to have significantly improved outcomes.
4)Insist that your doctor specifically address the issue of life-threatening arrhythmias. While usage of the implantable defibrillator is limited by the FDA, appropriate indications for using this life-saving device in patients with heart failure are changing frequently. Since a large proportion of deaths in patients with dilated cardiomyopathy are sudden and due to arrhythmias, this is an important issue that needs to be periodically revisited.
5)Ask your doctor if you are a candidate for CRT. This new therapy is possibly the most important recent advance in treating heart failure, and many doctors are still completely unaware of it.
6)Finally, monitor the newspapers, magazines and the Internet for advances in the treatment of cardiomyopathy and heart failure. A tremendous amount of research is being conducted in this area, and on many fronts, and it is likely that important breakthroughs will come to the attention of a vigilant patient before they will come to the attention of their doctors.
