Prognosis

[joebee39]

Hello Forum.  Is there anyone out there who has been successful in obtaining a no BS prognosis from your cardiologist.  Every time I ask what my estimated longevity is I'm given the same old generality - "fifty percent of patients with CHF die and fifty percent survive after five years."  CHF is a broad category of specific conditions.  This overall statistic may apply to the broad umbrella of CHF but what about different categories, e.g. dilated v. hypertrophic cardiomyopathy, idiopathic v. viral and various cobinations?  Any information would be greatly appreciated.

Thanks.

[grendslori]

I forgot to mention that the prognosis in Hypertrophic Cardiomyopathies is far worse if it is diagnosed in childhood. The reason for that is because the child still has to go through puberty. A lot of children develop diastolic heart failure as they turn teen-agers due to their growth rates. I don't think there is a lot of difference in this disease being compared to Systolic CHF, my daughter was robbed of her childhood and teen-age years due to HCM; had anyone seen her on the street they would have sworn she had CHF, she couldn't walk on level ground without severe angina and SOB; she later developed severe angina at rest. The prognosis in patients like this is not good and we were told from the beginning she was going to die.

[grendslori]

Hypertrophic Cardiomyopathoes are not all genetic in origion; sometimes this disease hits sporatically. Some people can live many years with this disease, but that depends on the degree of heart wall involvement; this disease has been seen at autopsy even in stillborn babies. This form of cardiomyopathy involves diastolic heart failure, unlike dilated cardiomyopathies which involve systolic heart failure. About 2% of the population die suddenly from this form of cardiomyopathy due to arrhythmias. This is a muscle disease of the heart, as all cardiomyopathies are, and the only treatment for either of these two cardiomyopathies,(along with Restrictive Cardiomyopathy) is heart transplantation, which is not a cure for the diease; transplantation only extends life.

[Dr. Kokil Mathur]

Hi
Thanks for writing to the forum!

I can understand your frustration and the need to know the answers. Determining the prognosis in CHF depends on a number of factors including patient specific factors. Since I have not examined you and it’s not the same as talking to you face to face, I am providing you only with information that does not include patient specific factors. The information provided may or may not hold true for you.
In patients with idiopathic dilated cardiomyopathy (IDC), the prognosis is worst in presence of heart failure as in this the cause is not known. Overall survival depends on the degree of left ventricular dysfunction and the presence of heart failure symptoms. Lesser the symptoms lower is the five-year mortality, may be as low as 20%. Worse the left ventricular function worse is the mortality rate with approximately 30% falling under one-year mortality.
Prognosis of patients with viral dilated cardiomyopathy is better than that of idiopathic but still not so good especially id symptoms of heart failure start. The virulence of the virus and its effect on the heart determines the prognosis.
Angiotensin-converting enzyme inhibitors and beta blockers have been used to treat heart failure associated with dilated cardiomyopathy and have been shown to reduce mortality rates.
In patients with alcohol induced cardiomyopathy may improve dramatically and remain in remission simply by abstaining from alcohol.Other underlying treatable causes like diabetes etc yield a better prognosis.
In contrast to dilated cardiomyopathies, hypertrophic cardiomyopathies have a better prognosis. Genetic in origin these result in sudden death. However the mortality rate is lower than that of dilated cardiomyopathies.

Hope this helps. It is difficult to comment beyond this at this stage.  Please let me know if there is any thing else and do keep me posted. Take care!

[sharyn5]

Hi, Boy do I understand your frustration!!!  I personally HATE the way the Docs won't give a solid answer and then look at you with that look of "pity"....
I have gotten great info from the Cardiomyopathy Association Website... I am attaching a link... I hope you find it as helpful as I did.  There are some great people there who have lived with this disease for a long time!!!!  (See the HOW LONG Thread) under the topic Dialated Cardiomyopathy in the Message Boards.  http://www.cardiomyopathy.org/Cardiomyopathy_Information.html