15 weeks!

Today is 15 weeks post-surgery for me, and probably only in the past week or so that I feel like I'm coming back online to myself. It's slow but steady.

An example: I went to the beach with friends a couple of weeks ago - I didn't go on the beach other than 5 mins to take pics - and sat in the living room or deck the whole weekend. It took me almost a week with a lot of napping to get my energy back up to where it was before. 

The rehab nurse is redoing her plan since she used to working mostly with heart attack patients my issues are different. I struggle with the exercises and have shortness of breath still, but each day is a little better!

Little Darth Vader has open-heart surgery

♥ ‘I don’t have a choice. I have to go through it. I don’t like it and it’s still scary — but I have to. So I think I might as well go through it with a good attitude.’ - 


Congenital heart defect survivor Max Page (aka Little Darth Vader). 


Little Darth Vader to have open heart surgery

Join us in wishing Max the best! (he has the same defect - Tetralogy of Fallot - that I have)

Chest burster!

I survived the chest burster!

3 times!

Is fear holding you back?

♥ Lazerow, who was born with a serious heart defect had a singular message to deliver: learn to live without fear. He had an emergency valve replacement in his heart. (I really needed to see this today; I'm struggling, hard day at rehab, emotional, and generally exhausted. It's tough.)

This week, Buddy Media, a social enterprise software company, was acquired by cloud computing giant Salesforce.com for a staggering $689 million. 

Shortly after he signed the deal, Buddy Media CEO Michael Lazerow made this inspiring YouTube video

Bone saw

-->I don't care what happens, I just don't want to hear the bone saw.<---

It's 12 weeks today since my 3rd open-heart surgery. Getting better has been all over the map, good, bad, tough, & easy (I'm alive!).

Still creaky, still hurty - less so thankfully - and I get super-tired from doing very little but I feel more solid. 

I'm also wrapping my head around the fact that I lost more than 2 1/2 years of my life with that previous terrible, wrong valve that wasn't working for me.

ekki mukk

I love this new Sigur Ros song. It means "Not a sound."

With the my new pulmonary valve, it's a human valve, so there's no longer the hard-kick ticking of it beating against my rib cage. And the lyrics translation just makes it even more touching.

I don't know how accurate it is, but it feels right.

Let’s breathe deep
and while
we can
close our eyes
let our ears hear
there’s no other sound
just our breath
and our heartbeats
and our spirits

Walking to New Orleans

Week 1 cardiac rehab completed - it's hard, really hard -physically & emotionally. I can walk for about 6-7 mins on the lowest treadmill setting then stop & start again.

Today they played "walking to New Orleans" and the awesome Yat lead nurse told us about growing up a few houses down from Fats Domino and how "Daddy and him were buddies because they had the common 'hobby' of going to bars...and drinking."

way worn out and tired