Friday, February 28, 2014

i carry your heart with me (I carry it in my heart)

Beautiful words by EE Cummings. 

And speaking of hearts....mine is all better.  I had AV Nodal Reentrant Tachycardia. Otherwise known as a really fast heart rate.  Think of the feeling you get during the long ride up the steep hill of a roller coaster. Click. Click. Click. The noise the chain makes as it pulls your little car up and up and up. Your hands are sweaty, you feel clammy. Then, the almost completely still millisecond pause of anticipation before careening down that hill leaving your stomach in your throat.  Only you aren't on a roller coaster. And it happens at the most inopportune moments. That's how I was beginning to feel. A lot. A lot more than I wanted to acknowledge because, let's face it, I simply don't have time for that shit. And did I mention I am not a fan of roller coasters?   And the medicine I was taking made me feel funky. Like in slow motion. Think Keanu Reeves in The Matrix scene where he bends all around the bullet and it's weird and jumpy around him. And I don't like to take medicine.  At least not the kind that makes me feel drunk and high and like I'm staggering. Don't get me wrong-I don't mind feeling drunk and high and staggering, just not at work. It was getting difficult to tell the difference between me and my patients. 

So I went for the quick and dirty, 95% fix rate of a cardiac ablation.  So into the cath lab, get the good drugs, get three catheters in my left groin, two in my right, some rapid rhythm induction, a little cauterizing and wham, bam, I'm awake in the CCDU with nothing more than an ugly bruise on my left thigh.  I have to say I was a little disappointed the CCDU did not have massages and Chinese take-out and a champagne fountain we all thought it did due to the super-strict, members-only guidelines it used to have for admission. 
For my non-NKCH folks the CCDU is our newest unit known as the Cardiac Clinical Decision Unit. And clearly they relented on their guidelines if they let me in there. 
They do have pretty nice rooms.  Would've really loved some Chinese food though. 
Anywho-all good and back to work on Saturday. 

i am never without it (anywhere i go, you go, my dear  

And today my heart is with all our Rare friends on Rare Disease Day.   
A rare disease is classified as a 'disease or disorder affecting less than 200,000 Americans at any one time.'
Ethan's chromosomal anomaly 18q- occurs in 1 in 40,000 births and with only about 1000 people affected worldwide, it definitely puts the bald kid in that category. 
Most rare diseases are thought to be from faulty genes. So thanks to our bad genes-we have been blessed with the most wonderful, amazing little guy. And with his funky genes we were thrust into a world where we have been even more blessed to get to know some other pretty amazing and rare kiddos and their families. 

So I wear my 'jeans for genes' today because I ❤️ someone rare.  
Ethan, we love you and wouldn't trade you for any fancy schmancy designer genes in the world. 

i fear no fate (for you are my fate, you sweet) 
i want no world (for you are my world, my true)
and it's you for whatever a moon has always meant 
and whatever a sun will always sing is you

here is the deepest secret nobody knows
 (here is the root of the root and the bud of the bud and the sky of the sky of a tree called life;which grows higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart 

i carry your heart (i carry it in my heart)


Check out the global genes project. 


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