Day 28 of thanks: Two hearts

Day 28 of thanks: two thumb prints make a heart aka another human being's pulmonary valve inside of me. It's not something I try to think about too deeply because I just can't. I might never be able to. I think about it every day though. And it's weird.

Have a Heart Fund Raiser!

https://www.paypal.com/webapps/mpp/send-money-online

email address: leilanimichel@gmail.com

You can also send a check to:

Lei Lani Michel
PO Box 2587
Reserve LA 70084

Every little bit helps! All of it goes to medical bills. 

Letting go of the illusion

Tomorrow is my last day in this phase of cardiac rehab, and it's been an emotionally and physically exhausting and motivating experience. I can now walk more than 100 yards, although slowly, and I can get around reasonably ok. I still get very very tired easily, so it's a precarious place. In May, it was super-tough to walk up a flight of stairs for my high school reunion and now I can with less effort. There's still a long way to go, and I'll go to get a stress test next week to see how my heart and lung function has improved.

I'll be entering what they call Phase 3 of cardiac rehab - it's still 3 days a week, about 2 hours each time - but now it's to concentrate on stamina and endurance with more aerobic exercises. It's such a different ballgame with congenital patients.

In a more frustrating corner of recovery, I'm also going to see if I can do cognitive therapy to help with the brain problems post-op. I'm forgetful and can tell my brain isn't doing what it's supposed to. I might not need a lot, but I want to get tested for what feels like the pump-head syndrome - but I figure it will take time for everything to come online. There's a lot of changes that are happening, and the most awesome Riki Thompson gave me such good advice this week --> let go of the illusion.

That is, let go of trying be where I think I should be or where I want to be and don't find comfort in the illusion of it...but to be present and alive in what is happening now. ♥

Hurricane Isaac - Light, heart, and tears

Here is a video I made showing the emotional feeling after Hurricane Isaac. The music is an original composition by my brother-in-law, Chris Bogen. It's peaceful and haunting, and you can see more of his work at solderkong. I'm still working through all of the emotions. Don't have the words yet.

Hurricane Isaac - LaPlace and Reserve - we believe

There are no words right now to explain the emotions surrounding the flooding of Reserve and LaPlace of St. John the Baptist Parish in south Louisiana after Hurricane Isaac. I made this video to celebrate the strength of our parish!

Cajun Heart Home

This is a picture of my Dad's camp in Garyville, Louisiana. It's the heart of the swamp and a place close to my heart. 

Lung branching with an absent pulmonary valve

This is so amazing and terrifying to see at the same time. Because I didn't have a pulmonary valve when I was born, my lungs seem to have change to accommodate my sick heart. 

I got this information from.  http://emedicine.medscape.com/article/899249-overview

Tetralogy of Fallot (TOF) with absent pulmonary valve is a rare congenital anomaly characterized by features of tetralogy of Fallot with either rudimentary ridges or the complete absence of pulmonic valve tissue. Congenital absence of the pulmonary valve with an intact ventricular septum occurs, but this is much less common. The absence of mature pulmonary valve tissue leads to severe pulmonary regurgitation, which is often associated with massive dilatation of the pulmonary arteries and which is characteristic of this syndrome.

An interesting feature of this anomaly is that the ductus arteriosus is frequently absent. However, when the pulmonary valve is absent and the ventricular septum is intact, a normal ductus arteriosus is also generally present. 

The image above compares the pulmonary artery branching between healthy patients and those with absent pulmonary valve syndrome.