Thursday, July 19, 2012

Uncertainty

Sudden Cardiac Arrest (SCA) leaves its survivors a bit shell shocked at first.  So few of us survive and even fewer with intact hearts and brains.   Many of us had no diagnosis before that day, and many will never learn the root cause of our sudden electrical disruption.  We didn't have heart attacks; this was not plumbing; this is not the build up of cholesterol or inflammation in our arteries ---- this is Sudden Cardiac Arrest - this is a heart that simply stops beating.   Most of us had a heart that was deemed "healthy" right up until it stopped beating.

What we all had was an electrical outage.  We definitely all had that.  Bu they can't tell us much.  Often they can't tell us why; they can't tell us the probability of its happening again; they won't give us odds.  Maybe it will stop again, maybe it won't.  Instead, they give many of us defibrillators in our chests.  Because unlike the electrical outage in your house, the one in your heart doesn't just "come back on again" in a few minutes.  And no, CPR won't restart an electrically stopped heart - it just buys a little time.

None of us had warning; we wake up after our SCA and someone tells us our new story.  Electrical outage, heart stopped, we know nothing.  Sorry.   It's a long list of adjustments.  Many have heart or brain damage to contend with.  Most are not permitted to drive, at least for a few months.  We are told not to scuba dive, no MRI's - ever.  Airport security poses some new issues.  We worry about what is safe and what suddenly is unsafe.  Some get implanted defibrillators.  Probably all of us get some medication to take - although in my heart of hearts, I think they're pretty much guessing with that too.  Just in case.   So we struggle to adjust.  We fend off fear on top of fear.  We slowly adapt.
We are scared, we're grateful, we know we are exceptionally lucky and unlucky at the same time.

Mostly, I think what we are is stunned.   This softens over time, but it doesn't go away - this is stunning, this naked fact that our hearts simply up and stopped.   There are some things in life that are meant to be certainties - the sun will rise tomorrow and set tonight.  The sky is blue, clouds are white.  Puppies and children are cute.  Homemade pies and plums are wonderful.  The ocean will take my breath away every single time I see it.  Dolphin and deer raise one's spirits.   Libraries and hardware stores are just the most wonderful places.  A good baseball game is magnificent, particularly one that starts in the late day and ends under the lights.  The Cubs will never ever win the World Series again.    And healthy hearts will continue to beat.  Certainties.

Just like sunrises and dolphin - you should never have to think about whether a 'healthy' heart will keep beating. Of course it will.  We SCA survivors know it's no longer true.  We find one another on the web and we grapple with uncertainty and fear and the joy of our exceptionally good luck.

But each of us knows,  every single day -  that something in there went off the rails.  Our hearts are not normal.  We may still not have a diagnosis, we may still be told our hearts are otherwise 'healthy', but we know ----these hearts are not normal.  They simply stop.  They are not sure things.

So Chicago, take heart - the Cubs may win again one day.


5 comments:

  1. For me, what has been really scary is that the SCA is electrical in nature, and electrical can be fickle. They can't explain fickle. It doesn't register very well with science. I did have a myocardial infarction first, then SCA's two weeks later. They couldn't explain why the SCA's occurred. Said the heart might have been "angry". Sounds fickle to me. They can't say why it happened or exactly what specifically I should do to keep it from happening again. Luckily, I am now about 18 months out from the SCA's and the "fickle" seems to have mostly gone away. But for at least a few weeks there, fickle was right there Nd prominent. I'm still scared that it might come back.

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    1. Oh geez. Don't we all want more science than "fickle" and "angry". This is awfully close to using mythology to explain heart rhythms....

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  2. Marty,
    Like your SCA, mine occured out of the blue on December 20, 2009. No prior problems, strong heart,mild hypertension, outside of that nothing of significiant. Non-smoker, non-drinker, nothing stronger than asprin, worked/retired disability) as letter carrier, walked 7 to 8 miles a day. Had all the standard test for SCA, heart cath (gold standard) no blockage, no heart attack. Best explanation offered by Cardo/EP Specialist was either gentric or small blood clot that was thrown causing heart to go into fatal arrhythmia.
    While I am so gratful to have survived the SCA, since 12/09(roughly 2 1/2 years ago)with no current problems and to have lived life in some form of semi-normal existance, the uncertainty of the ICD firing again with or without any cause I feel like I am living on the knife's edge, forget about the anxiety and stress and all the other nuisances associated with uncertainty. And speaking of playing a guessing game with our life's and medicine,it's frusrating to me, that (we)"the specialist" don't know or can you a satisifactory answer with all the advances in medicine.
    So,you kiss your wife everyday,enjoy the blue skies, smell the roses, and enjoy life.
    Yes, one day the Cubs will win again.

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    1. I agree with you completely. Except maybe on the Cubs. :)

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  3. Marty,
    I've really enjoyed reading your posts in your blog. Have been reading them since the time you mentioned it on the Inspire site. I'm not an SCA survivor, but am the mom of one (19 now, but 17 when it happened). I've also got the same genetic condition (CPVT) and symptoms that caused his SCA (and my 23 yr old has it too, but no symptoms at this time). Your post puts it all so well. We don't have an ICD, but as his EP said "if he had an ICD and was killed by a shock storm (more likely for CPVT patient to experience shock storm), we would wish we hadn't put in the ICD, but if he has another SCA, we'll wish we had gone the ICD route.". The whole "risks outweigh the benefits" thing. So, as a mom, I am always worried, especially since said son is not consistent with his meds. He's 19 and survived his SCA with no damage, so of course in his mind he is invincible. That little pill is what stands between life and death for him. If he had another SCA, what are the chances his best buddy from high school would be there to save his life again? I think I read that only about 30% of bystanders would even be willing to step up and try CPR. To me, the ICD seems like a better insurance policy than relying on a 19 yr old boy to take a little pill every day. Yep, these thoughts consume me. A few weeks ago I was hospitalized for afib - and it was like - really??? Brand new problem for me. The doctors weren't too worried about the afib itself, but that it could trigger my CPVT arrhythmia because my ventricle was trying valiantly to keep up with the signals being sent to it from up above for 5 hours. Well, anyway, I really enjoy your posts. Your recent one about your uncle was very touching. Thanks for the blog. Oh, and yes - the Cubs WILL win the World Series again! I'm a "born and raised" Cub fan, so - Of course they will! Maybe even this year. Cub fans are eternally optimistist (LOL). Laura

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