Name: margalit
Location: Massachusetts, United States Professional writer, educational advocate, opinionated ultra liberal mother of 18 year old twins, living life in the slow lane due to hypertrophic cardiomyopathy, congestive heart failure, and diabetes.

email: margalitc at yahoo dot com

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Saturday, April 16, 2011

What is wrong with me? Part 1

Over the years many people, most of them trolls or anonymous posters have challenged my disability. These folks are not doctors or any other medical professionals. Mostly they are bored housewives in their thirties who think it is grand to make a sick person admit they are faking or using "the system" to their advantage. Looking at me when you think that? Good on you.

However, for those that know me IRL, or who have a long online relationship with me know that I'm not malingering and sucking the government's teat dry. Heavens Forfend! So I like to remind my dear readers just what is wrong with me and why, so we can clear up any misconceptions you might be harboring. I'm going to do this long, convoluted medical class in several steps. Part 1 is about my Hypertrophic Cardiomyopathy. Part 2 will cover congestive heart failure. Part 3 will be atrial fibrillation, and Part 4 will explain about diabetes and the heart.

So let's begin at the very beginning, shall we?

I was born with a congenital heart defect called obstructive hypertrophic cardiomyopathy. This means that my heart is thicker and larger than normal hearts. The thickening makes it harder for blood to leave the heart, forcing the heart to work harder to pump blood. As the heart is consistently working much harder, it starts to run out of flexibility and grows stiff.

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.


  • Chest pain
  • Dizziness
  • 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)
  • Fatigue, reduced activity tolerance
  • Shortness of breath and Shortness of breath when lying down

    Of those symptoms I have dizziness, fainting, heart failure, high blood pressure, palpitations, fatigue and shortness of breath standing, sitting, and laying down. These symptoms greatly hinder me ability to live a normal life

Some patients have no symptoms. They may not even realize they have the condition until it is found during a routine medical exam.
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.

I have an arrhythmia called atrial fibrillation and have an increased risk of blood clots and stroke. I take a blood thinner daily for it and get my blood tested every Tuesday morning. 

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.

Signs and tests

The health care provider will perform a physical exam and listen to the heart and lungs with a stethoscope. Listening with a stethoscope may reveal abnormal heart sounds or a murmur. These sounds may change with different body positions.
The pulse in your arms and neck will also be checked. The doctor may feel an abnormal heartbeat in the chest.
Tests used to diagnose heart muscle thickness, problems with blood flow, or leaky heart valves (mitral valve regurgitation) may include:
Not all of these tests are useful for evaluating all of these conditions.
Blood tests may be done to rule out other possible diseases.
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. My kids have been screened since they were 12 years old.


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). Last year I was in the hospital for 9 weeks getting stabilized. It was not fun.

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.  I have had this done and it has improved my life.

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

    I have had an ICD implanted for over 5 years now.

Expectations (prognosis)

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. Patients are sometimes advised to avoid strenuous exercise.


  • Dilated cardiomyopathy
  • Heart failure
  • Life-threatening heart rhythm problems (arrhythmias)
  • Severe injury from fainting

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Blogger Crazed Nitwit said...

Most excellent medical information! This is more concise and understandable than the pathetic med-surg textbook I had in nursing school.

18/4/11 1:07 PM  

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