Making spirits bright

I wanted to give an update on perspective with my heart and getting better related to the Very Bad Santa Crawl last night.

This time last year, I was very very ill...I parked across the street from where they were meeting, walked about 25 yards and was gasping, feeling sick, and could barely stay 30 mins. In May, we had our high school reunion and we parked about two blocks away.

It was 2 1/2 months out from my surgery and I could walk it, but barely.

And it was a hard, quivering heart feeling climbing one flight of stairs. 9 months after surgery, I'm still pretty slow, but I could keep up with the other people walking, could stand and talk to friends, and walk back to the car in pretty good energy. ♥

Help Lei Lani with medical bills from open-heart surgery!

Here's the link to help donate for medical bills! If you feel it in your heart to help, please do! I'm trying to raise $850 for the cost of my insurance this month and price of cardiac rehab. If you'd like to donate more, you can donate to cajunhearts@gmail.com. Heaux heaux heaux!

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Cardiac rehab Thanksmas party!

We had our Cardiac Rehab Phase 3 Thanksmas Lunch today. In true rehab style, we had to work out first before all the delicious (bad for the heart, good for the soul) food! No matter - it was great, and I am lucky to be in a group that has such talented cooks. Notice that the plastic silverware was my contribution. ♥ ♥

Nine months since surgery!

A little late with this one, but 01 Dec. made 9 months out from my surgery! I still get pretty worn down, but it's less so. I still have cognitive problems, but I can get through them. I still have heart flutters, but that's just it shimmying...waiting on the heart monitor results. And I'll be going back to Cleveland in Jan instead of December. And I'm still feeling like there's a long way to go, but that there's a long history behind me. Here's the link to the surgeon who performed my surgery. I just finished an email from someone on a valve message board asking what he was like.

Clearly his accomplishments are great, but what I remember most is that I asked for a sedative the night before the surgery to calm my nerves...and he told me - they fact that /I'm/ the one doing your surgery should be all the re-assurance you need. And it was, a truly comforting thorugh to know that it would be ok and that he hada lot of skill are exactly what helped catapult me back to life. ♥ ♥

http://www.clevelandclinic.org/thoracic/surgeons/Pettersson_Bio.htm

Dr. Gosta Pettersson is Vice Chairman of the Cleveland Clinic Department of Thoracic & Cardiovascular Surgery and Surgical Director of Lung Transplantation. He is board certified by the European Board of Thoracic and Cardiovascular Surgery. His professional interests include acquired heart disease (including aneurysms of the thoracic aorta), reconstructive valve surgery, and heart and lung transplantation. He has a special interest in reoperations, endocarditis, complex coronary artery surgery, aortic and mitral valve repair/replacement (including homografts and the Ross procedure), and adult congenital heart surgery. He is an experienced congenital heart surgeon now pursuing this interest in adults.

A native of Sweden, Dr. Pettersson received his medical training at the University of Gothenburg, where he also undertook his Ph.D. studies and defended his thesis. After completing a clinical and research fellowship in the Department of Surgery at the University of Illinois College of Medicine in Chicago, Dr. Pettersson served as a staff surgeon in the Department of Thoracic Surgery of Sahlgrenska University Hospital in Gothenburg, Sweden. Subsequently, Dr. Pettersson became a Professor of Thoracic Surgery at the University of Copenhagen and Chief Surgeon in the Department of Cardiothoracic Surgery at the State University Hospital Rigshospitalet in Copenhagen. While preparing for the transfer to the Cleveland Clinic, he was Chief Surgeon at the Private Hospital Hamlet in Copenhagen during 1998. He was appointed "expert" in matters concerning cardiothoracic surgery, including heart and lung transplantation, by medical authorities in Sweden and Denmark. He is licensed to practice medicine in Sweden, Denmark, Norway, the United Kingdom, and the United States.

A recipient of numerous awards, Dr. Pettersson has held guest professorships in China, the United States (Boston, Albany), and Romania. Dr. Pettersson is an extensively published expert on the Ross procedure, surgical treatment of endocarditis, and lung transplantation. Among his more than 200 published works are book chapters, journal articles, abstracts and scientific papers on a variety of topics related to his specialty interests. He serves as chairman of the Endocarditis Working Group of the International Society for Chemotherapy, a group of leading surgeons formulating recommendations for the surgical treatment of endocarditis.

An invited lecturer to many national and international conferences, Dr. Pettersson’s presentations include topics ranging from bronchial artery revascularization in lung and heart-lung transplantation to biological tissue in the treatment of aortic valve disease. He serves on the OPTN/UNOS Thoracic Organ Transplantation Committee for Region 10.

Dr. Pettersson holds memberships in more than 20 scientific societies including the American Association for Thoracic Surgery, the Society of Thoracic Surgeons, the European Association for Cardiothoracic Surgery, the Society of Heart Valve Disease, and the International Society of Heart and Lung Transplantation.

When time permits, Dr. Pettersson enjoys skiing, hunting, and horseback riding

Day 30 of thanks: going the distance

Day 30 of thanks: going the distance. Somewhere along the line I quit counting weeks out from my surgery and it hit me this race might be longer than I planned ...and that is pretty sweet. The sun has gone down and the loom has gone up and long ago somebody left with the cup.

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.

Mom support!

I have the best mom! She put this up after I was feeling low. 

Cardiac rehab suspended

It is likely that cardiac rehab will be suspended...for a MONTH ... i had a meltdown over this yesterday, but today just looking for alternatives to find a place that deals with heart patients in the new orleans area.

This is pretty emotional for me. In the past few weeks, my blood pressure had dropped when I was exercising, but I could tell I was improving across the board, at least slowly. But there's such a long road to get back to where I was, and the rehab gave me the courage to go on. 

I remember a friend sending this to me before my surgery in 2009. 

Origin: 

courage 

c.1300, from O.Fr. corage, from V.L. *coraticum, from L. cor"heart," which remains a common metaphor for inner strength. InM.E., used broadly for "what is in one's mind or thoughts," hence"bravery," but also "wrath, pride, confidence, lustiness," or anysort of inclination. Replaced O.E. ellen, which

also meant "zeal, strength."

---I cried today since it means that it will take more time for me to get better.  It's hard to describe how tough this journey has been. A friend suggested I think of positive things, and focus on a picture of myself that showed myself when I was strong and not sick. I think this is one of my favorites. My mom took it at Mardi Gras about 5 years ago. So much has changed since then, but I love the blue. 

Valve Failure

 This is the picture of my valve that was no longer working. I had a heart catherization, and I was awake enough to see the leaflets frozen open.

This is what caused me to have my third open-heart surgery. The valve was not working AT ALL.

Luckily, the team at the Cleveland Clinic knew what to do, and less than 36 hours later, I had surgery. I now have a cadaver (human) pulmonary valve.

I honestly never thought I would live to see the summer.

And now I can honestly say I never thought I would feel this ALIVE.

Rainy Droids

I've been feeling ok lately but if takes one rainy low-pressure day like today to make my chest sing like a violin. Eeeeeeee and ouch!

Relaxing on my parents couch watching Star Wars and hating all the totally unnecessary CGI It's a reminder that like the movie and my breast bone, when you fiddle with something originally perfect, there's hell to pay (These are not the droids you remember)

Meditation

Seeking new ways to treat post-traumatic stress, the Department of Veteran Affairs is studying the use of transcendental meditation to help returning veterans of Iraq and Afghanistan. Declaration of Independence from distractions.


I used meditation all throughout my time in the hospital. As I said before, I don't respond to painkillers like morphine, so the pain management was terrible following my surgery, especially in the ICU. It did something to me, I'd never experienced that level of pain before. 


To help get through it, I'd meditate, just blank out my mind to help make it through. This video is amazing, Sigur Rós: Rembihnútur. It means a double knot, something tough to get out of. 

4 months out from surgery. Day 21 in rehab, been upped a level. Tough but steady improvement. Still low blood pressure. I'll probably be taking intravenous iron from blood loss from surgery (I've been weak and tired). 


One major thing I've notice is how my brain seems to be coming back online, like I can remember things that I used to know. When I was so sick, everything was fuzzy and slowed down. Which means it's time tor relive world cup excitement now that I am AWAKE! Vuvuzelas for everyone! Waka waka!

Robots at the Cleveland Clinic

Tomorrow it will be 24 years from my first open-heart surgery, and today is 16 weeks from my third one. Most likely I'll have more in the future, hopefully not soon. 


Check out these wicked cool robots at the Cleveland Clinic who scuttle things underground, making healthcare better for docs and patients. 

When people say that we can't afford better healthcare, sounds like we don't have enough wood in the world to make desks because computers will just get bigger and bigger and bigger and we should give up making computers.

Alligator Hunter Floyd!

Here's my dad after hunting alligators. He's the one on the right (this is from maybe 15 years ago).

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

Cardiac Rehab begins

started cardiac rehab today. 


if the treadmill doesn't do me in, the cooldown to michael bublé will.

Heart Light

Not to put too fine a point on it...but sorry for being late, but thanks to everyone for all the wonderful birthday wishes!!! 


All of the good vibes totally help! Slowly getting better, chest still really hurts, but doing more each day, and I go to my orientation for cardiac rehab tomorrow. 

And thanks to Chris and Claire for the night light. Made out of New Orleans Mardi Gras beads. Love to all! ♥ ♥

7 weeks

7 weeks post surgery - feeling better, chest still aches a whole lot - it's amazing how nice life is without gasping for breaths all the time. 


Much lower energy and some erratic beats this week but going next Tues for stress test to begin cardiac rehab. 


Horrible insomnia but seems it's a common side effect, who needs sleep anyway? :)

Week 6

6 weeks out from surgery - feel ok, my chest area still hurts A LOT, like all the time. 


They cut a lot higher and lower than before, and here's an awesome description from the report. 


"We were able to peel the aorta and the right ventricular outflow tract off the sternum without getting into trouble." - have cardiac rehab set up for beginning of May, hanging in there! :)

Week 4

4 weeks after surgery! wanted to take a chance to thank everyone who has been sending me lots of uplifting emails and stuff. 


means the world! and an extra thanks to all the people who donated to help with medical bills...


i'm slow in sending thank you letters back bc it hurts to type and write (strain on my chest/sternum) but i will soooooon. just know it truly helped. it's been a kinda rougher week - tired - creaky - pain - but still feeling doing ok! ♥

3 weeks

Quick update - It's been 3 weeks since my open-heart surgery. 


Still hurt a good deal with my chest, and I have some type of nerve probs from how they positioned me on the table...so from my right hip to knee it feels like my leg has been sleeping - constant pins and needles - weird but ok. 

Overall, doing good. I can walk about 100 feet without having to stop, so yay! 


Long road ahead...


Thanks for all of the good thoughts, prayers, and support. 


Much love! Lei Lani

Out of surgery

6:40 pm CST Update: Mom and dad made it to Cleveland. 


They just got finished visiting with Lei Lani Michel - she still has tubes in her nose and throat and can't speak, but she was able to write things down on sheets of paper (testing to make sure blood is flowing to her brain). 


Dad says she looks really good for having just had surgery. Her pain is bad, but expected. 


She's now resting for the night. Will have more updates tomorrow morning. 


Thanks again, and much love to everyone!

Adventures of the Absurd

Nearly 20 years ago, I met an amazing girl who would ultimately impact my life in profound and joyous ways. I still remember the first time I saw her. I was in the backseat of my parents' car, and they had just pulled into a parking spot at Loyola University, my home-to-be for the next four years.

The girl, Lei Lani Michel, walked along the sidewalk in front of us, wearing a black shirt with white daisies on it, black shorts, and -- here's where I was sold -- bright blue 8-hole Doc Martens. I think I fell in love just then. Luckily, she ended up rooming in my dorm, just two doors down from me. I must have tracked her down sometime later that day, and in the conversation we had on the benches outside the dorm that night, something clicked that never could be broken.

There's not enough space here to list all the adventures we've had since then, though some moments are wonderfully memorable -- like driving up to Ruston, LA, to see her perform in a play where she had to scream some sort of wildly intense banshee-sounding grief-scream (keening, was it called?) at a framed picture of Steve Buschemi. Or the time we got the idea to make a huge banner out of construction paper with the words "Merry (se)x-mas" and string it up outside between the third floor windows of our dorm room. Or the times she brought me to the midnight showing of the Rocky Horror Picture Show in Metairie.

Or the time when I went to visit her for Towahpahsah, the 4-wheeler heavy Mardi Gras parade in Reserve, LA, where we took photographs of drinking straws in odd places (on top of the mounted heads of deer, planted into the garden, on the hood of the car) with the intention of mailing these photographs anonymously on a regular basis to a friend(?) who had a phobia of straws. We never put them in the mail, but I do still have a collection of photographed straws.

LL Bean hasn't just been my partner in adventures of the absurd. She is also one of the gentlest, most generous souls I've had the grace and good fortune to meet in this lifetime. I remember her once telling me about a dream she had had in which she was the angel of death and I was the angel of life, and we had keys that were used to determine the fates of certain humans.
I mention this because it seems to me that she is the one who is the angel of life. She is a person of deep compassion and sincerest warmth. She loves courageously and lives with spontaneity and enthusiasm. She subscribes whole-heartedly to one of her favorite quotes by Emile Zola, "I came to live out loud."
I'm telling you all of this because LL is going to undergo her third (THIRD!) open heart surgery tomorrow, and her insurance cannot possibly cover all the costs associated with the procedure. She was born with a congenital heart defect called Tetralogy of Fallot, and while her first heart valve lasted over 20 years, the second one has failed her, and she has been struggling for over 2 years with it. She'll be having it replaced on Thursday, 3/1.


Many of us who love her are trying to raise money via PayPal to help her with medical bills, and the link I'm sharing tells you how you can make a donation to her. I really hope you'll help.


LL's physical heart needs help, but her spiritual heart is tremendous. She has courage, in the sense that that word means "to have heart." She has approached this whole situation with grace and aplomb, and I'm humbled by her strength. I hope that this description of her has captured you so that you'll help us to help her.


We love her immeasurably, and we want to smooth out the road ahead of her as much as we can so that she can continue to live her life with the infectious enthusiasm we all so admire in her.

Cleveland Cardiology rocks!

Before my cath at the Cleveland Clinic.

Adult Congenital Heart Disease Clinic

Wonderful and amazing Doctor Richard Krususki, Director of the Adult Congenital Heart Disease Clinic at the Cleveland Clinic.