Was diagnosed with non-eschemic cardiomyopathy (dilated) with an EF of between 5 and 10% (two different hospitals) after being in the ER with what they called congestive heart failure. I've been reading a lot (online) about it and am a little freaked. Most of the sites state that only about 50% of people make it 5 years after diagnosis. How true is this???
I belonged to a on-line CHF support group from 1998 and kept in touch will last year. There were men and women who had been in CHF in their 60's and 70's and lived longer then the 5 year statistic.
They did research, they watched their sodium and fluid intake, they exercised and took their medicine. When they got tired they rested. They learned to pace themselves.
So don't get so freaked out by that statistic that you don't feel it is worth it to do all the things I mentioned.
Do everything you can because this will also give you a better quality of life.
Here is the information page from the web site: http://www.chfpatients.com/
Before taking on any exercise, please ask your cardiologist because in many cases, especially with such low EF, exercise is seen as something which could make matters even worse. Your heart is already unable to meet the bodies needs and is basically getting more than enough exercise. So please ask your cardiologist first.
Medication is very important, things such as ace inhibitors and beta blockers to keep your blood pressure normal and your heart as relaxed as possible. Other medications may be added for other associated problems with low EF. Diet is important as stated.
Has your cardiologist mentioned anything about a LVAD? a small pump inserted into the left ventricle to assist the heart? What advice has your cardiologist given you? What prognosis has your cardiologist given you?
Statistics? Forget about statistics. They are only an average taken of everyone who has the disease. Don't forget, if you are younger than most people. Most of the people listed in the statistics are elderly people who have many other things wrong with them. I take it you are otherwise healthy. I don't think you would fall into the same category as those in the statistics. With modern medicine, procedures and advances, you could live 20 years or more easily. Each person is an individual and needs to be looked at as such. Good luck. Pray. The power of God can overcome anything. Pray for healing. He will heal you.
I was diagnosed with congested heart failure (EF 13-29%) 6 years ago and I feel fine and EF is normal. Also, I had a CT scan and because of the amount of soft plaque (high calcium score) the CT scan's software predicted I would have a heart event within a year...hasn 't happened! There is a medical school of thought that cholesterol medication can reverse soft plaque accumulation!?.
The statistic of 5 years life expectation may be generaly accurate based on the data relied on (probably an insurance's acturary!), but the data relied on doesn't provide the significance and value of the components and that includes concomitant health conditions, age, family history, compliance with the prescribed medication and good medical caretakers, exercise, healthy diet, etc. Before there can be credibility for a significant statistical analysis to the probability of interest, there needs to be component analysis and specific values represented for the parameters in the model.
Statistics are there to scare people........forget about them! They told me my daughter would never live to see her teens (she had a bi-ventricular hypertrophy so her heart walls were 4cm thick, WPW,SSS,A-Fib,NSVT,RBBB,LBBB to name a few problems with her heart. A stroke at 10 caused by a bleeding disorder, kidney problems and Juvenile Rhuematoid Arthritis and Steven Johnson Syndrome). They told me to take her home (for her to die) and spoil her, let her enjoy what childhood she had left. At 13 she was in diastolic heart failure at 16 she was seeing a transplant team, at 22 she recieved a new heart. That transplanted heart has had 4-5 bouts of CHF and she now has an EF% of 15. And she is walking around and working part time. We were told that CHF is not judged solely by the EF%, it is diagnosed by that along with lung and kidney function as well. My daughter is now 33 and was recently married.....something her father and I never thought we would see happen. As I said.....forget the stats!
Oh come on, statistics are not there to scare people, in fact statistics often reveal problems and end up saving lives with medicine/surgery. You are confusing two different issues here. A specialist stating WHICH statistic a patient is can obviously make an error in judgement, but this is not anything to do with the statistics themselves. Let's say 100 people contract a virus and statistically we know that around 50% will die. Nobody would be able to tell the patients which would survive and which would not, this is the difference.
The statistics for non-eschemic cardiomyopathy dilated come from not a drug company, but the world health organization. So the scaremongering doesn't come from the data, it comes from the specialist guessing which statistic you are.
Overall, ed, I agree with you. However, statistics do not take into consideration the individual. Statistics, at one point, said that if you were HIV positive you had a year or two to live and that if you had AIDS, you were totally doomed. Tell that to my best friend who was diagnosed in 1984 and is still alive today. She's had a diagnosis of full blown AIDS at least 4 different times I know of with a T-Cell count in the 200 range. When she was first diagnosed, they gave her 18 months to live based on the stats. You think that didn't put her in a panic mode? For the vast majority of people who do not medically astute, stats can scare them. It's all through these forums that we write on here on the site. People who get onto the internet and read these stats also do not take into consideration of how those stats came to be, they only see themselves and what they are going to. The EF% is a classic example in this forum post. People think CHF is based only on their EF%; it's not, it's based on several other factors as well as the symptomotology of the individual.
To provide an insight and understanding regarding the 5 year 50%. Is that statistic relating to individuals older than 60?...don't know!. The statistic would be different if it were more inclusive say individuals over 50...yes,can't disagree. Does the statistic include individuals with a respiratory condition older than 60? No. Include any age differenatial at all for any concomitant health etc., etc. No. To say 5 years/50%, doesn't even make sense unless it more clearly defines and evaluates all relevant variables for a statistical model as well as a large sampling, not some small sampling of an acturial table of an insurance company who wants to increase their premiums to include all heart patients. That's the source of this misinformation...true the insurance company has a statistic of 50%/5 years (maybe), but the clients are/were disabled with a stress syndrome associated with their former employment. Under those circumstances do you believe all heart patients should pay the same premium if they are younger, no concomitant health issues, etc...just a heart issue?. .
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