Is it appropriate to refer to all cardiomyopathy patients who have experienced CHF as terminally ill? Some people refer to this condition as eventually progressing to death, no matter what the response is to medications. Doesn't the phrase "terminally ill" refer to visible end-stage deterioration, or am I in denial about my life expectancy as a CM & CHF patient? (I am 38 yrs. old and have ejection fraction in upper 40's after 10 months of medication.)
All cardiomyopathy patients are definitely not terminally ill. It is true that in years past, our ability to treat this condition and retard its progression was quite limited, and patients did poorly. In fact, patients with advanced heart failure symptoms, on average, often did not survive beyond several years following the diagnosis.
However, I believe that the prognosis for this condition has improved markedly due to better available therapies-- principally medicines-- as well as a better understanding of the process that underlies cardiomyopathy and congestive heart failure. In specific reference to your question, prognosis/survival in CHF is related to several factors. These include metabolic exercise capacity (how much "work" a patient can perform on a regimented treadmill exercise test that measures oxygen utilization by the body), the severity of the ventricular dysfunction, the presence of life-threatening arrhythmias, and several hemodynamic parameters that can best be measured by catheterization of the right side of the heart (or possibly by echocardiography). Given that your EF is in the high forties, and you've done well over the past ten months, there is every reason to believe that you will remain stable in the future. An active, relatively healthy person with few/no limitations on activity has a very good prognosis. I would recommend that you continue your medical regimen, and discuss with your cardiologist whether you are taking an ACE inhibitor and a special beta blocker known as Carvedilol. Both of these medicines have been shown to improve prognosis in CHF.
I'm confident that "terminally ill" is a wholly inappropriate label to place on an individual in your current situation. Information in the Heart Forum is for general purposes. Specific diagnoses and therapies can only be provided by your physician.
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