The longest day - part one

A recap of the day so far:

3:45 am  Day began in what should be (and IS) still considered the middle of the freaking night with the radio alarm going off to half classic rock-n-roll half static and the 4am wake-up call follow-up
Brain cells not operational ... as evidenced by the growing list thru the day of thing I maybe meant to bring to the hospital with me .. despite the giant set of bags accompanying us.


4:55 Nice driver from the hotel takes us to the hospital b/c it's just plain damn wrong to make the heart patient walk himself to the hospital pre-surgery! We did not get the potential police escort.
We're so early we beat the newspaper delivery trucks.


5:05  MLK leaves for the first time and round at pre-op and day of waiting begins for real. Very quiet in the hospital


5:30  JEB meets MLK in the pre-op prep area to get his gear and have our moments before we say our "see ya laters". He gives me his wedding ring and I'm wearing it on a chain  ("near my heart" ... awwwwww. Treacly sweet moment).  Says he was doing fine with his relaxation until I showed up and started babbling.
I'm thinking he wasn't quite joking ...
He wants me to learn to "just be"  in the present and in his presence. Ohhhmmmmm.  Gonna be tough but I'm trying.


6:00  We still talk.   Ok, mostly I babble. he hums and sings some and tries not to get bad tunes stuck in his head. I accidentally put them there anyway.  He says his new "happy word or place" may be "coffee".


6:20  We say our official "see ya laters" and kiss goodbye and off he goes to prep.
I manage not to cry. This is for the best. He's at the best place.  [Repeat to self many times all day until I finally believe]


6:40  Jen S my good good dear buddy since college arrives to keep me company and distract me. We go for my 2nd breakfast of day and to catch up and keep me occupied.


8:30  go back to family area where our families have commandeered a giant table


9:00  first surgery update - he's in the 'major portion of surgery'  -- guess he's cracked and ready.


Info session

Aaaand we're off!!

The Sitting & Waiting Championships have begun!!
They've taken Michael up for surgery prep & booted me out. Surgery itself likely to start approx 1hr or so - 7am hour sometime I think. More info will come as I know it.
Commence the good thoughts, karma, mantras or whatever you believe. And we feel your hugs here already.
Peace
Jenn

Can you be too informed?

I think, no, I know M is the best informed patient ever. From his years in medical editing and publishing and through the years in the pharmaceutical industry he can write the damn medical texts himself and explain his condition probably as well as any of the doctors. If you have doubts, read his blog posts about the cath or his original posts on what the hell his condition is and how it all works. See??  Medical jargon far beyond the average lay person! It can make following the conversation during consults with the doctor(s) challenging because they sit there and talk 'medicalese' and I have the deer-in-headlights look. I don't know whether his impressive knowledge impresses the doctors or scares them because they've finally encountered someone who knows nearly what they do, without the years of extra study and fancy-pants degrees. He's either a great patient or a pain in the .. ahem.  But it is fascinating.


Me, I'm the "medical moron" in this pairing and am still struggling with how the heart works and the bits and parts -- but I'm a good little librarian researcher so I can find info (thank you HowStuffWorks! But I get easily distracted, like by these bits). And thankfully the CC has patient literature out the whazoo (see, there's a medical term I know!) and lots of pretty pictures. Like the ones that the nice clinical research nurse gave us this morning. 
And unlike the patient, I did find the video presentation we just sat through on 'being a heart patient' informative. Ok, really bad production and condescending, but informative. 


Ok. About time for the Surgical God to come talk to us. 


Peace.
J

Recap of why we're talking about hearts & caretaking and all that

In summer/fall of ‘08, after some odd health blips in past few years, Michael went for a check-up and the docs found what they thought was a mild heart murmur and said probably not to worry, no rush. But, based on advice of well-knowing family, he went to cardiologist for a work-up anyway. Initial tests (stress echo) were not good and indicated one kind of serious problem for which they ordered a near immediate cardiac catheterization, causing much panic around here. But it was a false positive - no blockages, no heart attack imminent- but bad news was it confirmed he had an uncommon, genetic based heart disease.

This condition called hypertrophic cardiomyopathy (or go here) has messed up the muscles of his heart and the left side is enlarged, the whole thing is stiff and doesn't flex or pump well, with blood getting obstructed and not pumping out to the body like it should. Always short of breath, palpitations sometimes, near fainting others, and is generally miserable and no longer to be active like he wants or needs. We've seen tons of docs and he was under care of specialists in this condition in Boston since January ‘09 -- with thought that medicine could control his symptoms and give him back some better quality of life -- that's true for most of patients with HCM.

But not for him. By late this summer it was still bad, maybe worse, and there were really no more medicine options for him. So it’s now January ’10 and we’re at the preeminent heart center in the country, maybe the world, for him to have open heart surgery to do a myectomy and cut out the obstructing part of the inner heart muscle and give him back a better working heart and better life.

Peace.