Jun 20, 2011
Now I have a diagnosis; I have a ton of questions and need info and need to find a doctor. Hypertrophic Obstructive Cardiomyopathy or Obstructive HCM fits everything I've been experiencing but I don't want to be saddled with the dx if that's not what I have...yes no maybe yes no no no yes which is it?
Mayo clinic says it's a rare disorder but then goes on to say HCM affects one or two people in every 1,000; how is that "rare"? http://www.mayoclinic.org/hypertrophic-cardiomyopathy/
It makes me want to go to the dr's I've been to and jump up and down...ok I can't jump up and down, but I'd take my paperwork put it in their face and say BOOYAH! this diagnosis makes so much sense and fits everything I've gone through in my life...
HOCM is a condition in which the heart muscle becomes thick. The thickening makes it harder for blood to leave the heart, forcing the heart to work harder to pump blood. The first symptom of hypertrophic cardiomyopathy among many young patients is sudden collapse and possible death. This is caused by very abnormal heart rhythms (arrhythmias), or from the blockage of blood leaving the heart to the rest of the body; which they've told me was nothing since I was young.
Hypertrophic cardiomyopathy is a major cause of death in young athletes who seem completely healthy but die during heavy exercise. However, certain normal changes in athletes' hearts can confuse the diagnosis.
Obstructive HCM is due to midsystolic obstruction of flow through the LV outflow tract as a result of a Bernoulli effect–induced systolic anterior mitral valve movement toward the septum. The significance of this obstruction, however, is highly controversial. Some investigators and experts believe the obstruction has less to do with the overall hemodynamic and pathophysiologic manifestations of this entity than the inappropriate segmental hypertrophy, which, with its increased myocardial oxygen consumption and substrate for fatal ventricular arrhythmias, has much more significance in the overall clinical picture of this entity and the treatment and prognosis of HCM
Causes, incidence, and risk factors
Hypertrophic cardiomyopathy is often asymmetrical, meaning one part of the heart is thicker than the other parts.
The condition is usually passed down through families (inherited). It is believed to be a result of several problems (defects) with the genes that control heart muscle growth. Younger people are likely to have a more severe form of hypertrophic cardiomyopathy. However, the condition is seen in people of all ages.
Fainting, especially during exercise
Heart failure (in some patients)
High blood pressure (hypertension)
Light-headedness, especially with or after activity or exercise
Sensation of feeling the heart beat (palpitations)
Shortness of breath
Other symptoms that may occur are:
Fatigue, reduced activity tolerance
Shortness of breath when lying down
Some patients have no symptoms. They may not even realize they have the condition until it is found during a routine medical exam.
The goal of treatment is to control symptoms and prevent complications. Some patients may need to stay in the hospital until the condition is under control (stabilized).
If you have symptoms, you may need medication to help the heart contract and relax correctly. Some medications used include beta-blockers and calcium channel blockers, which may reduce chest pain and other symptoms, particularly with exercise. Medications will often relieve symptoms so patients do not need more invasive treatments.
Some people with arrhythmias may need anti-arrhythmic medications. If the arrhythmia is due to atrial fibrillation, blood thinners may also be used to reduce the risk of blood clots.
Some patients may have a permanent pacemaker placed. However, pacemakers are used less often today than they were in the past.
When blood flow out of the heart is severely blocked, an operation called surgical myectomy may be done. This procedure cuts and removes a portion of the thickened part of the heart. Patients who have this procedure often show significant improvement. If the heart's mitral valve is leaking, surgery may be done to repair or replace the valve.
In some cases, patients may be given an injection of alcohol into the arteries that feed the thickened part of the heart (alcohol septal ablation), essentially causing a controlled heart attack.
An implantable-cardioverter defibrillator (ICD) may be needed to prevent sudden death. ICDs are used in high-risk patients.
High risks include:
Drop in blood pressure during exercise
Family history of cardiac arrest
History of cardiac arrest or ventricular tachycardia
History of unexplained fainting
Life-threatening heart rhythms on a Holter monitor
Severe heart muscle thickness
Some people with hypertrophic cardiomyopathy may not have symptoms and live a normal lifespan. Others may get worse gradually or rapidly. The condition may develop into a dilated cardiomyopathy in some patients.
People with hypertrophic cardiomyopathy are at higher risk for sudden death than the normal population. Sudden death can occur at a young age.
Hypertrophic cardiomyopathy is a well-known cause of sudden death in athletes. Almost half of deaths in hypertrophic cardiomyopathy happen during or just after the patient has done some type of physical activity.
If you have hypertrophic cardiomyopathy, always follow your doctor's advice concerning exercise and medical appointments. Patients are sometimes advised to avoid strenuous exercise.
Life-threatening heart rhythm problems (arrhythmias)
Severe injury from fainting
If you are diagnosed with hypertrophic cardiomyopathy, your health care provider may recommend that your close blood relatives (family members) be screened for the condition.
Some patients with mild forms of hypertrophic cardiomyopathy are only diagnosed by screening echocardiograms because of their known family history.
If you have high blood pressure, make sure you take your medication and follow your doctor's recommendations.