Dear Noreen,
I was diagnosed with peri-partum cardiomyopathy with other complicating factors in March 2001. (Lupus, tachycardia-mediated) My cardiologist is very silent about details regarding this condition, as well. I did some research in medical books and the New England Journal of Medicine which I think is pretty accurate, although I cannot guarantee my conclusions.
You may already know that the ejection fraction is an important number, but there are others, as well. Ejection fraction, as you might know, indicates the blood output of the heart. Mine was about 25-30% when diagnosed, but with the use of drugs has gone up to around 50%. The ejection fraction is a very important indicator in longevity, because if you don't respond to meds, and their purpose is to elevate the EF, you will most likely continue to deteriorate into more severe heart failure. From what I understand, anything below 25% is considered severe, 15% or below is what is called end-stage. These people are talking about transplants. You can find your ejection fraction by looking at your echocardiogram reports. I highly suggest you get a copy of this because the other numbers I am going to suggest to you come from this, as well.
Two very important numbers are the left-end diastolic dimension, which is the size of your left ventricle between squeezes. This number gives you an idea of how enlarged your heart really is. My heart was at about 6.6 cm when diagnosed and now seems to remain at about 6.3. I'm unsure of how large this actually is, but have seen some figures in the New England Journal of Medicine saying that the high end of measurement for this factor is 5.2 cm. The left-end systolic dimension, which is the size of your left ventricle during squeezes, is also very important because it tells your cardiologist how well your heart is actually squeezing, thus, ejection fraction, etc. My squeeze went from 5.5 cm to 4.5 cm which is apparently very good because it indicates a big change in squeeze. I believe the high end of this factor was about 4.0 cm.
Although the right side of my heart has remained within normal parameters, it has doubled in size in less than six months. (0.9 cm to 1.9 cm) It would be my guess that this is troublesome especially in relation to the last numbers which I will give you.
Intraventricular and interventricular septal wall thickness is an especially important number because it indicates just how thinned out your heart is. I was able to find measurements for these walls to generally be in the range of 11 to 13 mm. When I was diagnosed, the wall of my outer heart was 5 mm and the wall between the chambers of the heart was 7 mm. Six months later, the wall between the chambers of the heart had gone to 4 mm.
It is my understanding that ejection fraction is the most important measure of how well a heart failure patient is doing, because if the EF doesn't go up, you just slowly progress towards end stage heart failure. So, in my situation, this part is good. But according to the medical books which I investigated, the size of the heart and the thinning have a great deal to do with the outcome of this disease, because 50% of us will die of sudden death, sometimes caused by the simple rupture of the heart. So, the larger your heart gets and the thinner the walls get, the more likely you are to die a sudden death, from what I understand.
For those of us with Peri-partum cardiomyopathy, I've read conflicting studies. One study gave an average life expectancy for those with unrecovered cardiomyopathy at about 4.7 years. Apparently, if treated quickly, 50-60% of peripartum cardiomyopathy patients make a recovery. My case was diagnosed two years after the fact, and my cardiologist believes that it is very unlikely that, although I have recovered my EF, that the size and the thinning could ever recover. In such situations, those factors become important in figuring out mortality. For those who recover due to good medical care at the time of going into congestive heart failure, may make a full recovery within a couple of years. But not everyone does, and these numbers are means by which you can figure out if your heart is recovering, or just responding well to meds. Other studies have said that peripartum cardiomyopathy sufferers seem to do a little better than those afflicted with other types of cardiomyopathy. Bottom line, I guess, is that the American Heart Association statistics place Cardiomyopathy and congestive heart failure with about a 50% mortality rate within five years, and 85% within 8-12. Many of the medical texts I read, which were all current, actually said that 70% of cardiomyopathy patients die within five years.
It's very difficult to figure out where you might stand in those stats, but these numbers can give you an idea of how severe your condition might be. I sympathize with you regarding the silence of the doctors, I've asked them several times, point blank, for information regarding how long I have to live because I have three children and need to plan and prepare for my death. But they won't discuss it with me. I've learned that the best way to find accurate information which is not sugar-coated, is to go directly to the medical texts. Because they are writing for doctors, they don't pussyfoot around the death stats issue and are very blunt. They also go into great detail about the factors which can make or break you. These things are good to know.
Just in case your cardiologist didn't give you the basics, Cardiomyopathy is a disease of the heart muscle itself. Because of this factor, it is usually degenerative, except in those 50-60% of peripartum cases where a recovery is made. Because of the disease being in the myocardium or muscle of the heart, it makes it a very serious problem. People who have heart attacks will often have a smaller portion of their heart affected, while those with cardiomyopathy have disease of the whole heart muscle. This is what makes it even more difficult to treat.
On a lighter note, however, I did want to tell you that sometimes things do get better. When you're first diagnosed, they put you on a lot of medications which affect how you feel quite a bit and your body is making huge adjustments. For about 7-8 months, I was very rarely able to much of anything. In the last few weeks, however, I've had much less chest pain and fatigue. Others told me this when I first started taking meds, that it takes about 6 months to get used to them, and they were right. It's also because the medications are drastically changing how your heart is working. I lost 30 pounds in water within a few months of starting diuretics and heart meds. Your body makes a lot of adjustments. A lot of the medications also lower your excercise threshold, beta-blockers are notorious for that, so you must be careful to only do what you truly feel up to, or you'll pay for days afterward. As your body adjusts to the meds, however, sometimes your threshold gets better, it depends on the person.
I hope this was helpful, if you have anything else you'd like to ask, feel free. Remember, I'm a patient, not a doctor, but I have done quite a bit of research. God Bless You, and I wish for you to be one of those within the 50-60% category!
Marilynn
Posted on Feb 20, 2002, 11:37 PM from IP address 152.163.201.194