Friday, January 30, 2009

When is exercise not a good thing? When you have ARVD.

About 8 years ago, my grandmother died. She had smoked and drank her whole life (always had a Bud in her coozee), so nobody was surprised when they said she had a heart attack. And my grandpa said it was a blessing in disguise because they'd found cancer in several places as well.

Last August, my cousin Donna died. Suddenly. At age 40, leaving behind a husband and children that she'd home schooled. When we heard about this - we were all shocked. After all, Donna was only 9 years older than me, a young person still.

When her sister Robyne started to look into her sister's cause of death, listed as ARVD or arrhythmogenic right ventricular dysplasia (with mitral valve prolapse listed as a contributing factor), she learned that it is a genetic disease, inherited from a parent. Of course, this meant a lot more investigation and testing to see if Robyne was affected, too.

When she started to do research, our Aunt Terry pulled out grandma's autopsy report and told Robyne what was listed as the COD. Arrhythmogenic right ventricular dysplasia. If we had known and been tested 8 years ago, Donna would still be here.

ARVD is a rare heart disease that causes fatty or fibrous tissue to develop where normal heart muscle should be. The abnormal tissue interrupts the electrical impulses being sent to your heart, telling your heart to beat. It is a progressive disease (gets worse with time) and about 75% of the people who have the disease will develop symptoms (which is a really high number). Everyone who carries the disease, which doesn't discriminate between the sexes, has a 50% chance of passing it on to their children. Again, this is a very high number and not very comforting.

Because having an arrhythmia greatly affects the chance that your heart might misfire, there are particular things you are told not to do. Exercise, or other strenuous activity is the first thing they eliminate. If you've ever heard stories of a healthy 20 or 30 something who suddenly dropped dead, this is probably the disease the killed them. Caffeine, nicotine, alcohol and even cold medications are limited.

To diagnose the disease, a person would undergo about 6 noninvasive tests. There is no one definite test that can be performed to tell if you have ARVD. Rather, it is a set of symptoms and indicators taken as a whole that diagnose it.

The most common treatment for a person with ARVD is to be put on a beta blocker and have an internal cardiac defibrillator (ICD) installed in their chest.

My cousin Robyne had it confirmed - she has the disease. She was put on beta blockers and just had an ICD installed.

My sister and I will be going through all of these same tests to see if we, too, have this disease. As it stands now, I was diagnosed with mitral valve prolapse and PVCs a couple of years ago. I can only think of Donna's autopsy and how mitral valve prolapse was a "contributing factor." And how PVCs are a symptom of ARVD.

It changes your whole perspective on life. You feel like you might drop dead at any second. It's difficult to go to sleep, especially when your heart is beating erratically from the stress. You feel every heartbeat thudding and wonder if it's going to stop suddenly. And if it does, will you have time to dial 911?

I have cancelled my gym membership, until I get this all straitened out. I find myself I buy a house or do I run away to Europe to enjoy life before it's gone?

I think of the words I recently read in a book - I can't die now. I haven't even lived yet.

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