Shelby's Life and Whatnot

Nearly Normal

I just had a follow-up appointment with my cardiologist to discuss my echocardiogram (ultrasound) results. For everyone who's been following my progress, you won't believe this:

My Ejection Fraction is 50%!

This is an 8% increase from my previous echo of 42%. My heart had held in there at 42% for a year, so this echo result is a pleasant surprise.

A couple of important things to know--a "normal" Ejection Fraction (EF) is 55-60%, so I am nearly normal. More test results show that my Left Ventricle enlargement has reduced down to 3.8--I don't know what it started at, but the upper end of normal is 3.7, so I am practically there as well! My mitral valve prolapse (leaky valve) has also reduced so much that I don't need antibiotics before dental treatment anymore.

I'm also able to reduce my beta blocker, Toprol, to 100 mg. per day as long as I closely monitor my heart rate. If I go above 80, I'm back to 150 mg. Still, that's a far cry from the 200 mg, then 175 mg I've been on for the last 2 years.

My doctor cautioned me, however, not to get cocky. Well she didn't say it in so many words, but that was the gist. I'm still not quite normal, and even if I were in the normal range they would be high enough to warrant treatment. I will still be on the meds for the rest of my life, because if I were to go off of them, my heart would go right back into congestive heart failure (that's nothing new, every doctor has also pointed that out).

Finally, she's going to look at my test results from my primary doctor. You know, the one I had in January? The one I already asked twice to have them sent? *sigh* But anyway, she wants to start me on a statin (a cholesterol drug) since there seems to be a lot of new evidence showing that statins help work with the other heart meds and have a positive influence on treating cardiomyopathy.

For some more technical information, click the extended entry below.

Shelby's Extremely Basic Explanation of Her Heart Problem for Beginners:

Idiopathic dilated cardiomyopathy--commonly called just cardiomyopathy, this is my official diagnosis. Idiopathic means "We don't know where the heck this came from," dilated means that the heart is enlarged (usually to a great degree, as mine was in 2002), and cardiomyopathy, a term for a heart that isn't functioning properly.

Congestive heart failure, or CHF--Not nearly as alarming as it sounds, this is when the heart is not beating sufficiently to keep up with the needs of the body (the Heart Failure part), including the ability to rid the body of excess fluids. Congestive means that the body is experiencing edema (swelling due to excess fluids)--usually refers to congestion in the lungs and extremities, but in my case I had a lot of problems with my lungs and liver.

Ejection Fraction (EF)--this is the percentage of the amount of blood your heart is able to pump out versus how much it takes in. Normal is 55-60%. When I was diagnosed, mine was only 16%--extremely low. When it gets below 10% or so you can expect to be hospitalized until your heart transplant comes in.

Right and Left Atrium, Right and Left Ventricle--These are the 4 chambers of the heart. The atriums are on top, the ventricles are on the bottom. The right side of the heart pumps blood through the lungs, then into the left ventricle. The left side has more to do--it takes the blood from the right side and pumps it to the rest of the body. Since the left side has so much more to do, the pressures are much greater. In a heart with cardiomyopathy, something has damaged part of the heart muscle. Like any muscle, if you work it out, it gets bigger. Damage to the heart muscle forces the left ventricle to get bigger (and consequently, weaker). This is bad.

Arrythmia--The right side also sends out the electrical signals to the rest of the heart telling it to beat. The electrical signals travel over the surface of the heart. If something goes wrong with the electrical signals, bad things can happen to the heart--such as atrial fibrillation (not life-threatening), non-sustained ventricular tachycardia (where the heart beats too fast, but is able to resolve it by itself), sustained ventricular tachycardia (can be fatal unless it turns into a non-sustained version), and ventricular fibrillation (always fatal unless the heart muscle is shocked in some way). There are other types of arrythmia but I won't go through them here.

My type of arrythmia--I experienced several runs of non-sustained v-tach. That's the kind that doesn't kill you, unless it decides to stick around. The reason this happens is because if the heart becomes enlarged, the electrical signals (which, as we recall, travel over the surface of the heart) can be misread or missed entirely.

Implantable Cardioverter Defibrillator (ICD)--This is where the ICD comes in. Instead of waiting around for my heart to go into a fatal rhythm and hoping that someone is around with shock paddles to fix it, doctors implanted an ICD. The ICD is implanted under the skin with a lead (wire) that goes through a vein and attaches directly to the heart. The ICD then monitors my heart activity, and if it senses a fatal arrythmia, it sends a shock to correct it. This is very scary, but it does save your life. I have not been shocked yet and hope that I never will be. As a handy added feature, the ICD also includes a pacemaker, which senses when the heart beat gets too slow, and sends out smaller shocks (which you usually can't feel) to get the heart back up to an acceptable rhythm. This has also never happened to me.

Airport Security Arches--A serious pain in the ass for those of us with an ICD. Since I have a chunk of metal in my chest I set it off every time. There's no danger from the metal detector itself, it just means that I have to have a hand search. Every. Freakin'. Time.

Remodeling--It's not just putting in an extra bathroom! Remodeling describes the process of the heart changing shape--either getting bigger or smaller. My heart has remodeled considerably since my initial diagnosis. This gives me enough energy to do something like, say, remodel our bathroom.

I hope this has answered some of your questions about my heart. Please note that I am in NO WAY a medical professional and that these explanations are EXTREMELY basic. So if you found this site by a search engine, please don't take my word as gospel--it's best to clear up your confusion by asking your own doctor. Thanks!