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Heart Disease

If you've been diagnosed with viral cardiomyopathy is it a guaranteed death sentence?


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July 16, 2015 7:27PM

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I was diagnosed with viral cardiomyopathy in 2001. Leading up to the diagnosis I was getting more and more short of breath, sweating profusely, and some swelling. I was working night shift at the hospital (Respiratory therapist) and sitting at the table with a co-worker when she mentioned that I should go to the ER and get checked out, I did. The ECG came back reading Left Bundle Branch Block, We did an echocardiogram that AM and found I had an EF of 21%, (ejection fraction = The ejection fraction evaluates how well the heart is pumping; Normally 50 - 70 percent). 3 days later we did a heart cath and confirmed the findings from the echo. I was lucky that I found things early with no enlargement of my heart; I started taking Coreg 25mg BID and Altace 10mg QD no strenuous activity for the first year. In Dec 2006 on my last echo my EF is now 55% and I am taking much lower doses of the Coreg and Altace with the same results. I will be on these meds for life but I am still here and very thankful. My strongest recommendation is to listen to your cardiologist and DO WHAT THEY SAY. I was lucky s below a bit pessimistic. Cardiomyopathy and myocarditis are separate diseases. Viral myocarditis does recover if its not severe and you survive the acute illness (possibly with intensive care etc) It can also be treated by transplant if it is severe. Overall the mortality is said to be 50% and I lost a medical friend to it recently. Good luck. Unfortunately, it is a fatal disease. Patient have a survival expectancy of approx. five years after diagnosis. Antiarrhythmic and ACE Inhibitors are sometimes helpful in relieving some of the symptoms.

A glimmer of hope. My father was diagnosed with this disease in 1989 and survived until 2006. It began as pneumonia, progressed to double pneumonia and then the virus moved to his heart reducing the pumpage of the heart by 90%, that's right he had 10% of the normal person after the virus had run it's course. This man was disabled and would turn red and then purple walking less than 10 steps. He was forced into retirement at 45 (diesel mechanic) with 3 children still at home. He had too much to live for to die so he lost weight, followed all the doctors orders, and slowly worked his way back to 15% pumpage. He worked first on just walking around the house, then running errands, the more challenging things like tinkering with the lawn mower. Ten years after he was disabled the doctor released him to go back to very light duty mechanic (supervisory and teaching mostly)work part-time, later to increase it to full. He had a massive heart attack 15 years later that claimed his life, they had given him 6 months! During those fifteen years he saw his children graduate, marry, all of his grandchilren born and celebrated 40 years with his bride. The man even pastored a church again. He accomplished everything he wanted to before he passed. This time allowed me to know my Dad, so valuable. Never give up! The human spirit is a remarkable thing. If you've got faith in a higher power that helps too. You set the goals and beat the odds. In feb 2001, I was diagnosed with Viral cardiomyopathy, spent 2 months in a medically induced coma on heart/lung machine, and my heart "healed itself" while I was on the support system waiting for a transplant.

Today I'm back to my old 1 hour/day exercise routine, feel great and show no signs of the disease. I find the info such as the one you received earlier USELESS! I pushed myself to exercise ( I had to relearn to walk after so much bed rest), listening to my heart and resting when necessary, but DID NOT give up.

Too many people take it as a death sentence when in fact 50% of people recover according to my cardiologist! Go to a major institute, such as MD Andersen, Vanderbilt, etc. for treatment. It's worth your while and stay positive! The heart is a muscle and with training, it can be strengthened.

Hang in there and ignore the negatives! I was diagnosed with viral cardiomyopathy after suffering pancreatitis. My heart is very weak. I also had congestive heart failure in spite of having an artificial heart valve. I spent approximately 2 1/2 months in Temple Univ. Med. Ctr. I have been on a specific protocol and although I am weak at times, I do not feel that it is a death sentence. I'm 68 years old and hope to have another 5-10 years. I don't think many people can have a guarantee as to how long they can live. I have no blockages, kidney disease, pulmonary disease and if I didn't do well on the protocol I was in line for a heart transplant. Yes you do get quite tired, but you have to be aware that at those times you need to rest. The secret is not to overexert yourself. I was diagnosed with Viral Cardiomyopathy when I was 26. At the time I was working as a fitness instructor and going to graduate school. My diagnosis was not as severe as others subsequently none of my doctors said anything about dying in 5 years. I have not been as active as I once was but I am still living and have no plans of dieing soon. 7 years ago wife diag. with "VIRAL CARDIOMYOPATHY"-on medications since and seemly in good health--- NOT OVERWEIGHT--even now with ejection fraction at 15 she is quite active however she now will need pacemaker---The whole point is that since she was never overweight this in itself was a graet factor in her long term survial---no she does not exercise alot good luck youall I was diagnosed with viral cardiomyopathy when I was one and a half years old. I was also born with a Ventrical Septal Defect at birth and congestive heart failure. The doctors who delivered me said I wouldn't survive more than a few days. I was brought to Children's Heart Clinic under the care of Dr. Katkov in Minneapolis, Minnesota and he told my parents I would not die. I am now 20 years old and in school going for biology and genetics. I want to be a pediatric cardiologist. I won state for track three years in a row and I have been in dance since I was three. Now I coach danceline. So no, that is not true. As long as you believe and everyone around you believes, you will not die. When you have no hope for living, God sees that, and will do nothing. When you love life and enjoy every part of being on Earth, you will conquer. On Christmas Eve in 2004 I went to the emergency room knowing only that my heart was enlarged and that my regular doctor said I had pneumonia. After hours and hours of tests, they finally determined that I was having congestive heart failure and I was admitted. I was 32 years old. On Christmas day I had an eccocardiogram done and was told that my ejection fraction was 15%. I spent a whole week in the hospital while they tried to determine what had caused this to happen to me. I had no previous history of heart problems or any problems for that matter. They finally determined that the heart failure had been caused by viral pneumonia. I was released from the hospital and went back to work a week later. After 6 months I had another eccocardiogram and was told my ejection fraction was only 25%, but I felt fine. I was exercising every day and didn't really feel like there was anything wrong with me. I was told that the biggest improvement in your ejection fraction is made during the first 6 months. Because mine was still so low, they recommended an ICD. I had the ICD implanted within a couple of weeks. I have never been shocked, but just knowing it is there if I need it makes a world of difference. In June of this year I had another eccocardiogram done and was very pleased to find that my ejection fraction was now at 50%. Don't give up and don't think of yourself as a statistic. You have to decide that you are going not going to die. Viral cardiomyopathy is a rare thing, but you can recover from it.