Cardiomyopathy Prognosis

[calfan]

I am 53 years old and was diagnosed with ischemic  dilated cardiomyopathy two years ago during an executive physical.  Although I had had no symptoms, my ejection fraction was 30% at the time.  Since then, I have been taking daily dose of coureg, lisinopril, and spironilactin.  My ejection fraction improved to 45% one year ago.  Unfortunately, my last test indicated some regression to an ejection fraction of 38%.  I still have no symptoms ie shortness of breath or palpitations.  My left ventricle has continued to enlarge from 6.1 cm to 7.7 cm.  My question basically has to do with prognosis.  I have read that survival rates are roughly 75% after 5 years of diagnosis and 20% after ten years.  Is a remaining lifetime of 10 years reasonable to expect?  I exercise regularly and don't smoke (now or prior to diagnosis) or drink alcohol (since diagnosis).

[Zackman]

Hi calfan,

31yrs and diagnosed DCM Nov 2008! I think most websites and docs believe the rates are more like 20% mortality in year 1, and 10% every subsequent year! OR 70% die within 5yrs! I was actively contemplating ... extreme steps rather than waiting for the grim reaper .... BUT check this guy out ... http://www.medhelp.org/posts/show/254005    ;..... A guy who calls himself dod .. The last post was in 2005 .... but that still means he may still be alive .. OR at the very least lived 13yrs! I no longer contemplate .... I smile!  

Best of luck!

[Jo846]

I was diagnosed with cardiomiopathy 1 year ago.  Due to a viral infection.  I too have never had shortness of breath-
EJ fraction down to 12-15%/  Told a heart transplant only option.  Also told 1/3 people get better; 1/3 stay the same and 1/3 get worse.  But....thanks to STEM CELL procedure; I am feeling better and things are looking good!!!!

[NTB]

Hi. Just in general, I'd ask myself: what was different in the time that I got better from the time when I got worse? Did you, e,g, gain weight in the bad year? How did you blood glucose change?

As far as survival statistics, I'd consider what population those figure include. Do they include the people who might continue to overeat, refuse to exercise, even smoke etc? If so, then that figure does not really (probably) pertain to you. It would be ideal to identify the subpopulation that you belong to... exercising etc. What comorbidities do you have, would be another question.

In other words, there are modifiable risk factors that you can change to make yourself do better than the overall average.

At 53 yrs old, you'd probably do better than the overall average, too since I'm guessing that most HF pts are older. (though that's a non-modifiable risk factor, unfortunately :)

Your lack of symptoms seems to be a very good sign. I'd guess that you'd want to look at what is the manner of death from HF, and how lack of symptoms relates to that.

Also be aware that an EF% gotten from an echo can be wrong wrong wrong. A MUGA scan is most exact.

(P.S., you likely know to make sure to not get your potassium too high while on the spiro.)

[Encephalomalcia]

A friend of mine has cardiomyopathy.  She is quite out of breath and tired a lot.  She has had cardiomyopathy for 12 years now.  What the doctor told her when she was diagnosed is that 25% stay the same, 25% get worse, 25% get better, and 25% need a heart transplant.  She is getting worse, but it has been slowly.  She has an echocardiogram every 3 months to check her valves.  Lisinopril is great heart medication to be taking and studies show increases lifespan.  My grandmother just started Lisinopril now being that she has just been diagnosed with heart failure at 92 years of age.  I have noticed that you have another comment, so I will take a look at that one now.