Meet the cunning thief known as cardiomyopathy!

You may be wondering if there is a condition that led to my heart failure.  The answer is that the underlying cause is cardiomyopathy.  This answer might lead you to ask what the symptoms of cardiomyopathy are so that you can prevent it. 

According to the American Heart Association, some people do not have signs or symptoms in the early stages of the disease. Signs and symptoms usually occur later as the heart weakens.  So this is why I referred in the title of my post to cardiomyopathy as a cunning thief.  It stole my heart health before I even knew it was happening.  
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The Heart Foundation website says that cardiomyopathy impacts any age group and is a serious lifelong condition.  One of my nurses referred to my condition as a “significant cardiomyopathy”.   I tend to overanalyze statements like this, wondering if this observation means that my cardiomyopathy is even worse than a serious condition.  But now I have entered into a phase of “cardiac chill”, and this has helped me to realize that whether it is serious or significant is not the point.  The point is that I need to compile as much information about cardiomyopathy as possible.  Why?  Because how in the world do I expect to resolve or mitigate the problem if I have no clue how it occurred, or what my options are?

So just what is cardiomyopathy?  According to the Cleveland Clinic, cardiomyopathy is  “a disease of the heart muscle. It makes it harder for the heart to fill with blood and to pump blood.”  An article on the US News and World Report website (with the content developed by the Mayo Clinic) refers to cardiomyopathy is a “general term used to describe a diverse group of diseases of the heart muscle.  Cardiomyopathy is a major cause of heart failure and one of the most common conditions leading to heart transplantation. The condition can also cause abnormal heart rhythms.”

The Cleveland Clinic also relates that there are two classes of cardiomyopathy: Primary cardiomyopathy where the patient does not have other cardiac conditions that lead to weakened heart muscle; and secondary cardiomyopathy caused by a medical condition (such as hypertension, valve disease, congenital heart disease, coronary artery disease, or toxins/medications).

Are you confused yet?  Let’s make it a little more interesting.  There are four types of cardiomyopathy:

• Dilated cardiomyopathy – which involves an abnormally large heart muscle;
• Hypertrophic cardiomyopathy which involves an abnormally thick heart muscle;
• Restrictive cardiomyopathy which involves an abnormally stiff heart muscle; and
• Arrhythmogenic right ventricular dysplasia (ARVD) which involves an abnormal transmission of electrical impulses by the heart muscle (and is a challenging term to spell and remember!).

The common theme between each type of cardiomyopathy appears to be an abnormal impact on the heart muscle.

I have dilated cardiomyopathy.  I do not have underlying heart conditions that led to the dilated cardiomyopathy.  In fact, my dilated cardiomyopathy is referred to as idiopathic dilated cardiomyopathy.  According to the English Oxford Living Dictionary, idiopathic means:  relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown.  So we’re not quite sure how I got to this place in my heart life.

Happily, we are more sure about how to treat my condition.  My treatment has included medication with beta blockers, ace inhibitors and some diuretics; implantation of a pacemaker/defibrillator; and permanent and extensive lifestyle changes relative to diet, fluid intake and exercise.  So far my treatment plan has worked for me and I can’t complain.  But I would give just about anything to evict dilated cardiomyopathy from my heart.

Because there are so many types of cardiomyopathy, I had to wonder if you can have more than one type of cardiomyopathy at one time?  Or can you switch from one form of to another.  The answer to both questions is yes.  According to an article on the Cleveland Clinic website:  “Many conditions manifest as one type of cardiomyopathy and progress to another. For example, hypertensive heart disease can begin with a hypertrophic pattern and subsequently become a dilated cardiomyopathy. In addition, some conditions have features of more than one type of cardiomyopathy. For example, sarcoidosis can have features of restrictive and dilated cardiomyopathy at different times in the course of the disease.”

Does cardiomyopathy necessarily lead to heart failure?  According to the website cardiomyopathy.org, cardiomyopathy can cause heart failure but this does not always happen.  Often, treatment for cardiomyopathy involves reducing the likelihood of heart failure developing, or controlling and reversing symptoms.  I apparently missed that boat.

Can cardiomyopathy cause conditions other than heart failure?  Yes.  According to the Mayo Clinic website, cardiomyopathy can also lead to:  blood clots, valve problems, cardiac arrest and sudden death (this could be caused by abnormal heart rhythms).   If your cardiomyopathy causes your heart to get bigger, then the valves may no longer fit together and may not close properly.  I have this issue which basically means that my mitral valve has to pump some of my blood twice.

Here are some other facts about cardiomyopathy that may surprise you.  They are taken from an article on the US News and World Report website:

• Many people can live long, healthy lives not even realizing that they have cardiomyopathy because they have no symptoms.
• Cardiomyopathy is a leading cause for heart transplants
• Cardiomyopathy is the most common identifiable cause of sudden death in young athletes

Fortunately, the British Heart Foundation website also has enlightening, even upbeat information about dilated cardiomyopathy.  The foundation relates the same symptoms, causes and treatments as the other sources cited in this blog post.  But those sites can be a bit depressing, in that they say things like: “If the symptoms of heart failure develop, the outlook for people with cardiomyopathy can be discouraging—only one out of every three patients survives more than five years following the onset of heart failure.” 

Wow – what a downer!  However, the British Heart Foundation says “Dilated cardiomyopathy is a common form of cardiomyopathy and research has shown that with proper treatment and follow-up, most people with the condition live a normal life.”  Now there is a bit left unsaid in this statement.  For example, are we talking normal lives for people who have developed heart failure?  Or only for those who have not yet crossed into the category of heart failure patients?  I suspect the answer is that those of us who have crossed that point of no return now have lives that will never be the norm again. 

But even so, the devil is always in the details of how you plan to approach your chronic condition.  So for myself, I have implemented an optimistic mindset as I learn to manage life with dilated cardiomyopathy that has reached the stage of heart failure.  I have been diagnosed with heart failure for five years now, and I am doing well all things considered.  While some things had to change in my life, I can point to a number of positive factors in my life.  This is why I choose to be optimistic.

For those of you who have followed my blog from the beginning, you may recall that my first post was called “Saying yes to a heart break.”  As I was researching the topic of cardiomyopathy, I found that there is a form that of stress-induced cardiomyopathy sometimes referred to as broken heart syndrome.   

According to the American Heart Association, broken heart syndrome can strike even if you’re healthy.  Women are more likely than men to experience the sudden, intense chest pain — the reaction to a surge of stress hormones — that can be caused by an emotionally stressful event. It could be the death of a loved one or even a divorce, breakup or physical separation, betrayal or romantic rejection (which I suspect is the reason for the nickname broken heart syndrome).  It could even happen after a good shock (like winning the lottery.)  Broken heart syndrome may be misdiagnosed as a heart attack because the symptoms and test results are similar.

​Researchers are just starting to learn the causes, and how to diagnose and treat it.  Happily, for those who have this condition, broken heart syndrome is usually treatable. Most people who experience it make a full recovery within weeks, and they’re at low risk for it happening again.  Despite the title of my first post, I do not have broken heart syndrome. 

I do remain optimistic that even if my cardiomyopathy and my heart failure will not end with a full recovery, my condition seems to have stabilized - for now.  But the best part is that I have found success can be a place of calm and stability, and not the hectic frenzy of impossibly long work days.  And that is like discovering gold!