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I have been diagnosed with dilated Cardiomyophaty (DCM). I don’t know what causes that condition to my heart. I went to see a doctor just because I noticed that recently I’ve been losing my breath. He said that I have left heart failure. I am afraid and worried now, what does it mean left heart failure? How it is possible that I haven’t any symptoms of DCM? What is the cause of dilated Cardiomyiphaty? I am 47 years old, female.

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Hi, I’ve been diagnosed with dilated Cardiomyophaty too, and I went to check my swelling ankles. But in my case is right heart failure which means that I tend to accumulate fluids in the tissues and organs of the body, especially legs. As I know dilated cardiomyophaty is a heart disease which causes heart to be enlarged, but pump less strongly. As I didn’t have any symptoms just like you, I‘ve been told that in most cases cause of DCM is unknown. It can be genetically or caused by some viral infection, but I can’t give you any details. Your condition, left heart failure, causes the fluid build up in lungs, and that is way you feel breathlessness. Dilated cardiomyphaty causes weakness of the muscle heart; it becomes floppy and thin, and unable to pump blood efficiently around the body.
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I was 23 when I was diagnosed. I had been really sick with Mono which the doctor and I assume I got off a water fountain in high school when I was seventeen. I had slowly lost my breath, physical activites got really hard, I was so tired all the time and these and other symptoms just seemed to get worse as time went on. When I was 23 I got a headache like I had never had before and I called my Mom to come to my appartment and get me. The last thing I remember was calling her and the next thing I know she is yelling at me, shaking me, in my face and blowing in my mouth. Yup, she was doing CPR. Then she got me to the ER and they got me on the table and hooked me up to all the machined, everyone possible it seems, and everyone keeped asking me if I was on drugs. I said no. The nurses kept switching monitors and machines during this time because I was so young and what the monitors where saying coud not be right. I was in heart failure and dying and they just knew that that could not be true. Anyway, an internest who was on call came in and said she is dying stop switching monitors and treat her. At that time I stopped breathing and they put oxygen on me, then my heart stopped all together. They gave me a bolster of lydocain to make my heart pump again and I went into convulsions. Then I stopped breathing and my heart stopped and hear came more lydocaine and more convulsions. I died three times that night and as you can see survived. I was told I would die with in six months and I have lived 10 1/2 years later. The medicine is what is keeping me alive. I have just recently started haveing problems again and I am 34 now. So that is one long run for someone who was to die in 6 months. Anyway, this is my story. Get a really good internest you trust and get a great cardiologiest. Make sure your doctors listen to you and don't treat you like you are an id**t. Do a ton of research and that way YOU know what you have and can explain it to yourself and to others so you are educated. See if you happen to run across an id**t doctor you know is giving you bad advise then you can just walk out of his office and know never to go and see him again! LOL!!! I hope this has helped you. I will check back from time to time to see how you guys are doing.
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Have any of you been checked for iron overload? Hereditary hemochromatosis has as one of its symptoms cardiomyopathy. Juvenile hemochromatosis particularly is noted for this and because young people so rarely have heart problems, many die from misdiagnosis.

LizM
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