It has been quite a while since I visited these boards, but here I am, back like a bad penny! I came here a few years ago looking for answers, encouragement and support with back surgery and was not disappointed.
I am back on the boards with a new health issue and seeking answers once again.

I have just turned 51 and had a heart attack at age 50 a short time ago. I have been diagnosed with idiopathic dilated cardiomyopathy and left bundle branch block.

I was out of state when hospitalized and have just recently met my new cardiologist in the state I live. While hospitalized I received numerous EKG's, alot of blood tests, an induced stress test, ultrasound and a heart cath that was negative for blockage. They sent me home on meds and a low sodium diet & no smoking orders.

My new Dr, changed my meds a little, sent me back to work, started me on an exercise program and suggested we do a heart biopsy to see if we can determine the cause of my heart issues. I did schedule the test, but have since read up on it and have some reservations on the usefulness of the test.

Has anyone on the board had any experience with this test and whether or not it was helpful in their treatment plan? Somehow I cannot get past the fact that this might traumatize my heart more.

Any information would be greatly appreciated!

Still looking for anyone who has had experience with this test.....

(Thanks for any input you can provide!)

It has been quite a while since I visited these boards, but here I am, back like a bad penny! I came here a few years ago looking for answers, encouragement and support with back surgery and was not disappointed.
I am back on the boards with a new health issue and seeking answers once again.

I have just turned 51 and had a heart attack at age 50 a short time ago. I have been diagnosed with idiopathic dilated cardiomyopathy and left bundle branch block.

I was out of state when hospitalized and have just recently met my new cardiologist in the state I live. While hospitalized I received numerous EKG's, alot of blood tests, an induced stress test, ultrasound and a heart cath that was negative for blockage. They sent me home on meds and a low sodium diet & no smoking orders.

My new Dr, changed my meds a little, sent me back to work, started me on an exercise program and suggested we do a heart biopsy to see if we can determine the cause of my heart issues. I did schedule the test, but have since read up on it and have some reservations on the usefulness of the test.

Has anyone on the board had any experience with this test and whether or not it was helpful in their treatment plan? Somehow I cannot get past the fact that this might traumatize my heart more.

Any information would be greatly appreciated!
Hi there,

So you've been diagnosed with idiopathic dilated cardiomyopathy, but you said you had a heart attack--those two things don't necessarily go together. When you had your heart attack, did you have an angiogram which showed a blockage in any of your coronary arteries? I'll explain why this is confusing. There are two main categories of dilated cardiomyopathy: ischemic cardiomyopathy and everything else. The end result of these cardiomyopathies is the same, namely, the heart becomes like a thin walled and inflated "grocery bag" which doesn't have the same ability to pump as a normal, muscular heart. With ischemic cardiomyopathy, the route to the "grocery bag" happens because of large areas of heart which have been damaged because of infarction. Infarction is when tissue dies because it doesn't receive blood flow. This is what happens when one of the coronary arteries is blocked with a clot due to a ruptured plaque and the heart muscle downstream dies due to lack of blood. If one has a dilated heart which doesn't pump well with a proven history of blocked coronary arteries, this is called ischemic cardiomyopathy; however, in idiopathic dilated idiopathic dilated cardiomyopathy, the heart still becomes thin and weak, but the cause as to WHY this happens is not known, and when an angiogram is done, there is little or no blockages in the vessels.

Idiopathic dilated cardiomyopathy often hits young people unexpectedly who have no history of heart disease. Other ways one can get dilated cardiomyopathy include: problems with pregnancy, excessive alcohol intake, severe damage from heart inflammation (i.e. myocarditis) etc. etc.

In your case, they are saying you have dilated cardiomyopathy, but don't know WHY you have it; however, usually a cause is not sought and the person will be put on medications to help optimize heart function. The fact that the doctors want to do a heart biopsy means they are looking for something going on in the heart which may explain WHY your heart has become dilated and weak, and possibly see if it can be reversed. There are certain inflammatory conditions such as sarcoidosis which can cause heart inflammation, and can potentially be halted if treated early.

I take it you are on a bunch of medications including a beta-blocker, ACE inhibitor and perhaps spironolactone? Have the doctors given you any blood thinners like coumadin? Do you know what your "ejection fraction" is?

Thank you so much for the reply. I did find the information you provided helpful.

I have been doing a lot of reading, but some of what you get on the internet is some pretty scary stuff. My experience has been that this health board tends to give me a true in-site from other patient's experiences and helps my stress levels...

They did tell me that I had a heart attack in the ER. After all the testing, they diagnosed me with the dilated cardiomyopathy and I am currently on medications. Coreg, Captopril & Lasik. No blood thinners, in fact I had put myself on a low dose aspirin every day and they told me to quit taking that.

I think I had every test imagineable except the heart biopsy. I did have a heart cath, thru the groin that came out negative for blockages.

My ejection fraction is at 24 which I understand is what they are most concerned about right now.

I did know that idiopathic meant unknown cause and it has been suggested by the out of state cardiologist that it could have been viral.

I have read about the procedure, but have some reservations on what they may be able to diagnose with this procedure that can't be diagnosed with blood work??

I will read some on the sarcoidosis you mentioned. Again thanks for your reply and the useful information...:wave:

Hi again,

If your heart's vessels were negative for blockages, then you didn't have a heart attack. I wonder if what happened was that you presented in heart failure with a raised troponin in the blood and when they further imaged you, your heart's pumping function was poor and your heart's vessels were totally clean. You probably had something called myocarditis (usually viral in origin like the out of state person said) and now have sustained heart damage from that. There was another person on this board who had a very similar presentation to yours.

The likelihood of finding anything on the biopsy now is relatively slim. Before you presented with what you called "heart attack", but more likely myocarditis, did you have a flu-like illness? Also, for things like cardiac sarcoidosis, I was kinda just mentioning that in passing. Usually people who have this will have other systemic indications of sarcoid. You should know, though, that no blood test is good for diagnosing this. Your cardiologist feels strongly enough that there may be something reversible going on with your heart, and the only way to figure out is to rule out an infiltrative/inflammatory process with a right ventricular biopsy which is not replaceable by any blood test.

...

I have just turned 51 and had a heart attack at age 50 a short time ago. I have been diagnosed with idiopathic dilated cardiomyopathy and left bundle branch block.

...

Has anyone on the board had any experience with this test and whether or not it was helpful in their treatment plan? Somehow I cannot get past the fact that this might traumatize my heart more.


Like you, I have had almost all of the other heart tests, except for the heart biopsy.

I've been living with Heart Failure for over 20 years. During that time, my condition continued to worsen, until I finally took more control over my health. Over the past eight years, instead of continuing to get worse, I've been improving. Now, close to 70, I feel much better than I did 20 years ago, MUCH BETTER!

I fully documented my story here on Healthboards, Heart Disorders, under the Title: The four essential steps, that I've taken, that help me live with Heart Failure . The link, if you care to copy and paste it into your browser window, is: http://www.healthboards.com/boards/showthread.php?t=641933

At any rate, best of luck to you, with your health, and in deciding if a heart biopsy is best for you to do.

Machaon:

Thank you for your response. I did read your post even before I posted on the heart disorders board. You do give all of us great hope and faith that you are still going strong after 20 years.

I have made several life style changes in the last couple of months and one of them is begining an exercise program. I must say that I have been a little lax in this dept since my back surgery in 2003. In addition,

I quit smoking, I know I should have done this years ago....

I am now on a low sodium diet and have been learning to grocery shop & cook all over again.....

Baby steps, but I am getting there...

Again, thanks for your encouragement and support.

Back2Basics