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Subject: Re: dilated cardiomyopathy
Forum: The Heart Forum
Topic Area:
Posted by CCF Cardio MD-HSB on October 17, 1997 at 11:46:23:
In Reply to: dilated cardiomyopathy posted by Dallas on October 10, 1997 at 07:27:49:
: I was diagnosed with DCM caused by a virus in Sept 96. My EF was 22%. At the time of my catheterization in Oct. my EF had risen to 37%. By Feb 97, a MUGA showed EF at 50-55%. Another MUGA Sept 97 showed EF still at 54% with slight dilation of the left ventricle. As a result of this last MUGA with a continued EF of 54%, all my cardiac meds (20mg Prinivil; 25mg Hydrochlorothyazide; 325mg coated ASA) have been stopped and another MUGA is schedule in another 6 months. Would it be considered normal practice to stop all meds when a person's EF is still this low and there is still enlargement of the LV. (I also have 'right bundle branch block' as a result of the DCM). The only feeling I've noticed is a 'sponginess' in my ankles when walking up or down stairs and it was about 1.5 wks after meds stopped. There was very slight visual swelling of the ankles (pressure left no indentation!) which passed after a couple of days ... what could that have been?? Is it unusual for a person with DCM to improve like this?
Can this improvement last or do I now have to be extra careful about what I do physically or any colds/viruses I catch?? Is the fact that the LV is still somewhat dilated a cause for continued concern or is that to be expected as a result of the disease?? One can never actually be 'cured' or 'free' of this disease, can they?! Any info you can provide would be much appreciated.
Dear Sir: It is not unusual for people afflicted by " idiopathic " dilated cardiomyopathy to spontaneously improve. In fact, approximately 30% of patients do improve. So, congratulations on your recovery.
Unfortunately, medicine is an inexact science and many questions remain to be answered. We, the medical community, often do not know what causes dilated cardiomyopathy ( viruses, toxins, etc), or why certain patients improve and others deteriorate. What is clear, is that certain medications such as angiotensin converting enzyme inhibitors (ACE inhibitors) often improve symptoms and increase the life expectancy of patients with dilated cardiomyopathy. ( Prinivil is an ACE inhibitor) The elegant studies that proved the therapeutic benefit of ACE inhibitors did not study whether these medications are beneficial in patients whose heart function improves to near normal levels. At the Cleveland Clinic, we tend to continue ACE inhibitors for life. However, this is based purely on anecdotal evidence. There have been no large trials proving or disproving this strategy.
Fortunately, your heart function has improved markedly and you remain asymptomatic off all medications. If your heart function stabilizes and you remain free of symptoms ( i.e. shortness of breath, fatigue, leg swelling, etc), you may not require any medications. However, if symptoms should recur or your heart function deteriorates, the issue of medication must be readdressed. In addition, there are no formal guidelines regarding exercise in patients who have recovered from dilated cardiomyopathy. We recommend that patients not embark on an overly ambitious program and that they be supervised by a physician.
I hope that you continue to do well. If you would like to be evaluated at the Cleveland Clinic, an appointment with our heart failure group can be obtained by calling 1- 800 - CCF - CARE. Information provided in the Heart Forum is intended for general medical informational purposes only. Actual diagnosis and treatment of disease can only be made by your physician.
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