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Hypertrophic Cardiomyopathy (HCM), the Misunderstood Heart Condition

Cardiomyopathy, Heart Transplant, Hypertrophic Cardiomyopathy

Hypertrophic Cardiomyopathy is a heart condition in which there is an excessive thickening of the heart muscle. This thickening occurs without any obvious reason and can cause sudden death in some individuals.

What is frustrating about HCM (this is what Hypertrophic Cardiomyopathy is commonly referred to as) is that it is often misdiagnosed as a sign of athletically induced asthma due to similar symptoms. Many doctors, even cardiologists, are not familiar with this type of cardiomyopathy, and often patients are told that it is no big deal. In fact, it is a huge deal! A deal that could cost you your life should you have it and not control it properly.

There are many symptoms of HCM. Shortness of breath is a very common symptom, which may be why many doctors assume exercise induced asthma is the culprit. Many people with HCM often become short of breath during exercise or any type of exertion. Most people with HCM may have some limits in the amount of exercise they can do, while others may have it so severe that they have shortness of breath even while resting.

Chest Pain is another common symptom of HCM. The chest pain is thought to happen because there isn’t enough oxygen getting to the myocardium. The heart muscle is so thick due to HCM that the increased oxygen that is needed isn’t getting to where it needs to go.

Many people diagnosed with HCM have experienced heart palpitations at one time or another. Having your heart miss a beat or beat an extra beat can be normal. However, it can also be a symptom of HCM and needs to be checked by a doctor, especially if the palpitations occur with sweating and light-headedness. Light-headedness and blackouts are another symptom of HCM and should not be ignored. Many of these episodes occur during exercise, but they can also occur for no reason at all. Fainting and light-headedness need to be checked by a doctor immediately.

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There is no known cure for HCM, but there are ways to control it. Many people with HCM can control it with medication. Others need implanted devices such as a pacemaker or a defibrillator to help regulate heartbeats. In some cases, HCM can result in heart failure and the patient would be a candidate for a heart transplant. If left untreated, HCM can result in the sudden death of the person. However, with treatment and under the care of a physician who is knowledgeable about the disease, most patients with this condition can live very normal lives, with some restrictions.

HCM isn’t a death sentence, but people need to educate themselves and make sure that the doctor he or she sees knows enough about the condition to treat that person appropriately. It is a serious condition and it requires care by someone who knows what it is, why it happens, and what the best possible choices are for treatment.

Why am I writing about such a little-known heart condition? Well, for one, this condition is becoming more and more prevalent in society. The media is covering many stories of athletes who have collapsed and died suddenly due to an undetected heart condition. Many times that athlete was found to have HCM. I think it is important for everyone to learn about this condition because it is becoming more common, and it can be controlled if treated appropriately. Knowing the symptoms and seeing a doctor is key.

I also write because HCM affects me daily. Not because I have been diagnosed with this condition, but because my mother has had it for the majority of her life. She was one of the few patients who ended up with heart failure. I am happy to say that she no longer has HCM, because of a successful heart transplant two years ago. But, I am still affected by this disease everyday. You see, my mom’s type of HCM was found to be genetic. This means that I could still develop the condition, or worse, my two small children could develop it.

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For us, HCM means being proactive. It means the three of us are given routine echocardiograms to check for heart muscle thickening. I currently undergo the test every three years. My sons will undergo it every three years until they reach puberty. At puberty, they will have the testing done yearly until they are in their twenties. An echocardiogram is a great way to determine if HCM is present. We have been lucky so far; none of us have been given this diagnosis. There are still chances, even with our past echo’s being clear, that we can develop the condition.

For me, HCM also means that every time I am short of breath, or have a heart palpitation, I freak out a little. Could that palpitation mean I have HCM? Is my life about to change forever? It means calling my doctor and having some testing done. A good doctor will not put your concerns aside, a good doctor will see you, and do the proper testing to ensure that you do not have this condition.

For me HCM also means worrying a little when my four year old son says he is tired of running around outside. It means worrying when he seems to be a little short of breath. I worry, even though he had an echocardiogram a year ago and all was fine. I worry because with this condition, you just never know. I worry that my sons, should they be diagnosed, will not be able to participate in activities that they may love. Will they develop HCM and thus wipe clean any chance of playing competitive soccer like their dad did? Will they require surgery to keep them alive? If they have HCM, will they be proactive in their adult years and make sure they continue with the appropriate care?

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HCM will be a constant in my life forever. I have accepted that. My sons could develop this condition. I have accepted that. Like any mother, I am not happy about the possibility of something being medically wrong with my child. HCM is also something I could develop, even at 35. I have accepted that. I am accepting of it because there is no other choice with HCM. Either I accept it, educate myself, and find appropriate and accurate medical care, or run the risk of sudden death should a diagnosis happen to me or to my family.

HCM will always be in my life. Is it in yours? Do you know someone diagnosed, or perhaps someone who just has the symptoms of HCM? Do you personally exhibit any of these symptoms or were you recently diagnosed with HCM? If so, I urge you to find a HCM specialist who can treat this condition. If treated, HCM is manageable. If left untreated, it could mean the loss of someone you love, or even the loss of your own life

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