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Apr 14-20

This Week

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Sorry it's been so long since we updated all you beautiful people. 

1. I AM GREAT! Back to three miles/day walking (very nearly as fast as I was in January.) Sun is shining, working in the garden,  it's my birthday today! Sitting outside, burgers from Blue Door, glass of wine, a new fitness-tracker watch thingy (I let the resident fitness fanatics choose this one. Max and I are now brand buddies: Garmin forever!)

2.  Medical stuff:
A. I have completed all the hospital-inspired follow ups. Graduated from Cardiology clinic and Hematology clinic (at one point my platelets were super messed up, but it was just because, you know, I had a sudden cardiac arrest, nothing long term.) Will be on cycles of annual follow ups for . . . awhile? always?  We remain at: no known cause. 
B. Waiting for return of results from genetic testing. Because there's no significant family history that points us in a particular direction, they're going to spell-check all the genes known to be to connected to cardiac disease processes.  The outcome will be one of three equally possible scenarios:
- there is a specific type of alteration of a specific gene known to cause cardiac issues
- there is an alteration of a gene known to be connected to cardiac processes, but the specific alteration is not known to be connected to a disease process (ah, the great and mysterious variety of life!)
- there are no alterations to any genes
If there are results of clinical significance, there will be a treatment approach for me (yay!) - and my brothers and kids should get tested (yay?) and the treatment will be applied to them as well if they carry that gene. 
If nothing is found, we're still at: no known cause. Which is rare, but not as rare as you might think. 
C. Also upcoming: sleep study (apnea can elevate cardiac risk) and neuropsych testing (so we can find out if my brain fog is perimenopause or damage from hypoxia.) This is all just due diligence, nothing of significant concern. 
D. I am off all but one of the cardiac-arrest-related meds. Will stay on blood pressure meds for three more months to give my cardiac system all the boosts it needs to completely heal. Then: done!
E. I am a cardiac rehab ROCK STAR. (You gotta give me this one, cardiac rehab is the only context in which I am anything remotely athletic.) Started jogging again in rehab today - maybe I'll end up in better shape than I was when this all started! 

3. Theo continues to have an intermittent rough time. If you see him, or connect with him in any way, please offer your love. He still needs some boosts - and for good reason! Watching your mom go into cardiac arrest in front of you would do a number on anyone, let alone a 12 year old.  He's got his therapist and many, many tools to self-soothe and self-regulate, but he will soak up any extra love you happen to spill on him. Sometimes, just waiting for the feelings to pass can be really, really hard work.

All of you: your generosity (food, money, time, prayers, light and hope, laughter, love) has been profound and humbling and made a huge impact on the lives of every member of this family. Words can't possibly express how held and loved we all felt (and feel!) and how that love made it possible for us each to continue to put one foot in front of the other.  I was unconscious for the worst, scariest parts of this experience - but you all were aware and in the middle of it. I wish I could un-make that, un-worry and un-scare all of you, my most loved ones. Since I am not God or magic, all I can do is say: I love you, and thank you for sticking with me through this hard, scary stuff.  We are most firmly on the other side of it, and I am giddy sometimes with the delightful thought that I can hug each and every one of you very, very soon.

I'll do one more update when we settle the genetic questions, and then I'll probably put this Caring Bridge to bed. 

So much love to each and every one of you,

Onward!

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