How is DCM diagnosed?
You have or your family member has received a diagnosis of dilated cardiomyopathy (DCM). So now what? What is it? Dilated cardiomyopathy is reduced pumping function and enlargement of the left ventricle of your heart, caused by some damage to your heart muscle. This could be from a “heart attack,” your genetic background, a noxious drug, or in a few cases the irregular electrical operation of the heart.
DCM is diagnosed by clinical screening using
- an electrocardiogram, or EKG, which records the electrical function of your heart
- an echocardiogram, or ECHO, which images your heart and estimates the pumping function or Ejection Fraction (EF). EF is a measurement, expressed as a percentage, of how much blood the left ventricle pumps out with each contraction. An EF of 60 percent means that 60 percent of the total amount of blood in the left ventricle is pushed out with each heartbeat.1
- a history and physical, conducted by a physician or medical professional to ascertain relevant family and personal history as well as a physical examination.
Can DCM be cured?
DCM is, in most cases, a chronic condition, which means you will have to live with this the rest of your life. Medication and various devices can improve the functioning of your heart, and work better in some patients than in others.
There is no “cure” in the sense of restoring your heart to the condition it was in prior to whatever caused your current condition. However, if you have an underlying genetic predisposition, we have hope that gene therapy may eventually be useful. Your level of functioning, even with usual medications, may improve to nearly what it was before your diagnosis.
What are the prospects for long-term survival with DCM?
With appropriate medical intervention, treatment, and follow up, prospects are very favorable for an extended life after your DCM diagnosis.
Each and every case is unique, as is every individual, so there are many factors, which may increase or decrease your long-term survival. Most essential to long-term survival is the skillful use of medical therapy, and devices (pacemakers, implantable defibrillators), when needed. The good news is that doctors now have several well-tested and highly effective medications to treat almost any type of DCM.
Your survival also depends in part upon what actually caused your DCM. If it was from underlying genetic cause, there may be no cure until gene therapy for your specific gene is available. If it was from a heart attack (myocardial infarction), then preventing future heart attacks is important. If it was from chemotherapy used to treat cancer, then avoidance of drugs that impact your heart muscle is important.
As with any chronic disease, proper diet, appropriate levels of exercise, a positive attitude and excellent social support can increase the likelihood of a positive outcome.
However, without medical intervention, regular doctor visits and appropriate treatment, the prospects for long-term survival are pretty grim.
How much improvement can I expect?
Again, every case of DCM is unique. But many patients live long happy lives after their diagnosis. Some patients have deteriorating health and their lives are shorter. Some very ill patients, especially those younger without other major illnesses, may be eligible for heart transplantation. BUT, with medication, appropriate medical follow up, and avoiding known risk factors many patients live longer lives.
Where can I get support?
There are forums where patients seek support and guidance in managing their conditions. There are also several social media support groups, as well as physician-supported groups in some cities. Facebook Groups which may provide additional support and information include:
- Cardiomyopathy Support Group
Dilated Cardiomyopathy (2 separate groups)
To join device-related support groups, please visit:
- “Living with an ICD (Support Group)”
- “Pacemaker Support Group”
- “Living with a Medtronic Pacemaker, ICD, or CRT Device”
Also, be sure to follow DCM Foundation on social media for weekly news, stories, and updates about DCM: