Hypertrophic obstructive cardiomyopathy.
That’s what was wrong with me.
I had my heart surgery 4 years 11-1/2 months ago. As far as I knew, I never got an explanation of what exactly was wrong with me or what was done during the surgery. I didn’t know I had TWO valve replacements until a few weeks ago and I don’t know which artery was bypassed during my bypass.
To be more technical, the surgeon apparently explained everything, but I was so heavily drugged I’m not sure if I was awake for the explanation. I know I missed the whole thing about the second valve replacement because my best friend knew about it, but I didn’t. She wasn’t floating on Fentanyl.
The good news? UMass and Beth Israel are now connected so they can get my medical records. Eventually, it might sift down to me.
The bad news? My son needs to be checked for the same problem. His father died from heart-related problems as did both of his grandfathers and only luck kept me from sharing the same fate. So he has reason to be concerned about the condition of his heart. His father was only three years older than he is now when he died.
So, you ask, what exactly is “hypertrophic obstructive cardiomyopathy”?
Hypertrophic cardiomyopathy (HCM) is a disease in which the heart muscle (myocardium) becomes abnormally thick (hypertrophied). The thickened heart muscle can make it harder for the heart to pump blood.
Hypertrophic cardiomyopathy often goes undiagnosed because many people with the disease have few if any, symptoms and can lead normal lives with no significant problems.
However, in a small number of people with HCM, the thickened heart muscle can cause shortness of breath, chest pain or problems in the heart’s electrical system, resulting in life-threatening abnormal heart rhythms (arrhythmias).
NOTE: I had no symptoms that I noticed — which is not the same as not having symptoms. If it weren’t for my primary doctor’s alarm at the sounds my mitral valve was making, followed by serious testing that I had done at another hospital because the cardiologist to whom she sent me suggested I not worry about it until I had serious symptoms.
In this case, the serious symptom would have been sudden death, so I’m glad I realized the man was a jerk and went elsewhere for care. Even after all the testing, no one had any idea how serious the problem was until I was already in surgery. At which point, it was oh so clear.
I did not have chest pains, but I did have serious
shortness of breath.
Since I had asthma, I assumed my shortness of breath was asthma acting up. But I was wrong. It was not asthma but my ventricle packing its bags and trying to leave home without me. This is one of the problems of having multiple issues. Symptoms can (and do) overlap.
It’s really easy to assume that the problem you’re having is something familiar — like asthma. Except — shortness of breath can mean many different things. Heart disease is only one of them.
I once badly misdiagnosed a dog who had a known problem, but her problem was not the one I thought she had but something else. She died. We never found out what killed her, even after an autopsy. We assumed it was Lyme, but we never got a firm diagnosis. Lyme is funny that way.
Moreover, I never imagined I had a heart problem because my father’s heart problem was asymptomatic. As mine was until suddenly, it wasn’t.
Symptoms
Signs and symptoms of hypertrophic cardiomyopathy may include one or more of the following:
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- Shortness of breath, especially during exercise
- Chest pain, especially during exercise
- Fainting, especially during or just after exercise or exertion
- Sensation of rapid, fluttering or pounding heartbeats (palpitations)
- Heart murmur, which a doctor might detect while listening to your heart
Causes
Hypertrophic cardiomyopathy is usually caused by abnormal genes (gene mutations) that cause the heart muscle to grow abnormally thick. People with hypertrophic cardiomyopathy also have an abnormal arrangement of heart muscle cells (myofiber disarray). This disarray can contribute to arrhythmia in some people.
The severity of hypertrophic cardiomyopathy varies widely. Most people with hypertrophic cardiomyopathy have a form of the disease in which the wall (septum) between the two bottom chambers of the heart (ventricles) becomes enlarged and restricts blood flow out of the heart (obstructive hypertrophic cardiomyopathy).
Sometimes hypertrophic cardiomyopathy occurs without significant blocking of blood flow (nonobstructive hypertrophic cardiomyopathy). However, the heart’s main pumping chamber (left ventricle) may become stiff, reducing the amount of blood the ventricle can hold and the amount pumped out to the body with each heartbeat.
Risk Factors
Hypertrophic cardiomyopathy is usually inherited. There’s a 50 percent chance that the children of a parent with hypertrophic cardiomyopathy will inherit the genetic mutation for the disease. First-degree relatives — parents, children or siblings — of a person with hypertrophic cardiomyopathy should ask their doctors about screening for the disease.
Complications
Many people with hypertrophic cardiomyopathy (HCM) don’t experience significant health problems. But some people experience complications, including:
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- Atrial fibrillation. Thickened heart muscle, as well as the abnormal structure of heart cells, can disrupt the normal functioning of the heart’s electrical system, resulting in fast or irregular heartbeats. Atrial fibrillation can also increase your risk of developing blood clots, which can travel to your brain and cause a stroke.
- Sudden cardiac death. Ventricular tachycardia and ventricular fibrillation can cause sudden cardiac death. People with hypertrophic cardiomyopathy have an increased risk of sudden cardiac death, although such deaths are rare. Sudden cardiac death is estimated to occur in about 1 percent of people with HCM each year. Hypertrophic cardiomyopathy can cause heart-related sudden death in people of all ages, but the condition most often causes sudden cardiac death in people under the age of 30.
- Obstructed blood flow. In many people, the thickened heart muscle obstructs the blood flow leaving the heart. Obstructed blood flow can cause shortness of breath with exertion, chest pain, dizziness, and fainting spells.
- Dilated cardiomyopathy. Over time, the thickened heart muscle may become weak and ineffective in a very small percentage of people with HCM. The ventricle becomes enlarged (dilated), and its pumping ability becomes less forceful.
- Mitral valve problems. The thickened heart muscle can leave a smaller space for blood to flow, causing blood to rush through your heart valves more quickly and forcefully. This increased force can prevent the valve between your heart’s left atrium and left ventricle (mitral valve) from closing properly. As a result, blood can leak backward into the left atrium (mitral valve regurgitation), possibly leading to worsening symptoms.
- Heart failure. The thickened heart muscle can eventually become too stiff to effectively fill with blood. As a result, your heart can’t pump enough blood to meet your body’s needs.
Prevention
Because hypertrophic cardiomyopathy is inherited, it can’t be prevented. But it’s important to identify the condition as early as possible to guide treatment and prevent complications.
Preventing sudden death
Implantation of a cardioverter-defibrillator has been shown to help prevent sudden cardiac death, which occurs in about 1 percent of people with hypertrophic cardiomyopathy.
Unfortunately, because many people with hypertrophic cardiomyopathy don’t realize they have it, there are instances where the first sign of a problem is sudden cardiac death. These cases can happen in seemingly healthy young people, including high school athletes and other young, active adults. News of these types of deaths generates understandable attention because they’re so unexpected, but parents should be aware these deaths are quite rare.
Still, doctors trained in heart abnormalities generally recommend that people with hypertrophic cardiomyopathy not participate in most competitive sports with the possible exception of some low-intensity sports. Discuss specific recommendations with your cardiologist.
If this wasn’t a good news-bad news day, I don’t know what would be. The good news? All things considered, I’m doing fine. As far as I know, the valves are doing their valve-thing.
I’ve got 8 years — 5, realistically — before I’ll need a replacement battery. I also learned why I will never be able to live without a pacemaker. I had thought that maybe my heart would start doing the job all by itself one day, but that will not happen. But, assuming the rest of the tests next month indicate that all is well, I need to worry about my son, not me.
I think I’d rather worry about me.
If there is a moral to this story, it’s don’t self-diagnose. If you think something is wrong, don’t assume you have the answer. The odds are, you don’t. The internet is a good place to look up an existing diagnosis, but a bad place to get a new one. If it turns out your best guess was right, congratulations, but this is one of those times when an error can prove fatal.
I still think this problem wouldn’t have become such a life-threatening issue had I not also inherited my mother’s breast cancer. The drugs they feed you when you have cancer … well … I’m not even sure the doctor’s know what they do.
For the avoidance of goriness reasons, I decided you don’t need more pictures. You can always Google this yourself and see all the gore you want.
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But, speaking of wan, I’m still in the process of trying to work my way out of anemia — the last of the repairable issues on my medical agenda. I’ve actually found an iron pill that seems to work and doesn’t make me ill. I’m not taking enough of it, I know, but it beats out the nothing I was taking before.
