My Near Death Experience During Aorta Replacement Surgery

Near death experiences are usually referred to as 'NDE's and there are a number of references across the internet.  According to Wikipedia, NDE's are not rare, isolated events but rather quite widespread, with at least eight million Americans reportedly having experienced some type of NDE or other.

Mine occurred while I was having my first open heart surgery in the emergency room at Jacksonville's Memorial Hospital.

After driving myself to Memorial Hospital in Jacksonville (I know, I should have called 911 but I did not) and stumbling into the ER, the young surgeon on call determined my aorta was dissected root to foot.  He told me that he wanted to go in and replace the aortic valve and install a Dacron graft up to the aortic arch.

To do so I'd have to have my body cooled (hypothermia) and my body's heart put on bypass while they repaired the critically damaged cardiovascular system.

The entire  operation took about ten or so hours.  Recovery was difficult to say the least and I even had to go back through additional open heart surgery to mitigate subsequent heart infections.  Wearing the wound vac over my heart was tough, as was enduring the three months of 24/7 IV antibiotics and anti fungal medications.

This week I happened to catch a clip out of a Netflix series the teens were watching where the main character had been killed and his consciousness was wandering around the halls of a hospital.  He was shouting and calling out to all the humans walking around him but none of them heard him, nor did the humans pay any attention to the 'dead' main character.

What struck me was the empty, hollow feeling he was obviously experiencing, walking around calling out to all those other humans that could not see or hear him.  Obviously he was all alone.  Being alone can be extremely disconcerting and hopeless.

"That sucks",  I told myself.  But that was nowhere like my NDE.

While I was lying on the operating table during my aortic root and arch replacement my self awareness began to take a life of its own, separate from my body.

I can clearly remember what was happening, even to this day.  Unlike a dream that seems real at the time but fades from memory after a few short days, the NDE experience I had that day is as ever clear now as two and one half years ago.

I was so very aware of myself and knew exactly who I was.  My body however was on the operating table below with the doctors and nurses hovering over, cutting sewing and doing whatever thoracic surgeons and their teams do when installing mechanical heart valves and Dacron aorta grafts.

I did not call out to anyone like the main character in the teen's television program, but then again I did not feel like I needed to call out to anyone.  I was quite content, safe feeling and happy where I was, 'hovering' above the operating table.

Looking around I could see many people praying for me and sending me good thoughts.  This was interesting I thought, but I honestly was more interested in what I could see not in the operating room but in another part of my self-awareness.  There was an amazing place of really cool colors and sound I was witnessings.  I could fly, soar and felt very, very at home.

After the entire experience I felt somewhat guilty at not worrying about those people left behind on the earth while I was partying in the afterlife.  I knew my wife and kids and family would be OK.  I did not worry about them what-so-ever in my NDE state.  

I did not even think of calling out to the doctors and nurses.  There was no doubt my body was on the operating table and I could see much of what was going on.  

During my NDE I  was a self aware 'spirit', yet I had form too.  My form was not so much a preoccupying factor though as I 'hovered' in the air above the table.  I know my self awareness had form because I was bumping against the ceiling as I floated upwards.  When I'd bump the ceiling my form would float back down towards the other side of the room.  The floating up, bumping the ceiling and floating back down repeated itself over and over until I began taking notice of this occurrence.

The whole bumping into the ceiling thing really pissed me off.  Not because bumping hurt or anything, but because I was aware of an amazing array of new sounds and senses I was catching a glimpse of and I wanted to explore more.  There were so many beautiful colors I'd never seen before and sounds and scents and hues and textures and stuff I can not even describe.  There was a new existence out there that I was tasting and I wanted more of it, a place where I felt immense love and acceptance and belonging.

So many were there with me too.  This place where my self awareness was, was a very good city or town or wherever- whatever it was.  I did not want to leave.  As soon as a beautiful new form would pass by and I felt drawn to it, the bumping would start again.  That damned ceiling!  

The bumping meant I was not going to die.  I knew this as I continued to bump, and it disappointed me. I wanted to stay and explore this new place full of wonder and beauty.  As I floated up, bumped and floated back down I kew that if I were going to die I'd float straight through the ceiling, out into this place of wonder.  The bumping meant I was going to stay.  My earthly body was keeping me in the room.

During my long recovery period I revisited this plane of self awareness several times.  Two and a half years later I do not see this land so much anymore, except for those once-in-a-while nights where deep sleep takes me there.

Having my heart disconnected from my body and being cooled to hypothermia levels gave me a chance to see different things.

I do believe I almost died.  I also believe I caught a glimpse of what happens beyond our present self-awareness.  I am really glad I am here today to see my teens raised and spend days with my wife, friends and family.  Looking forward to many more years here before I drop dead.

But get ready for a cool adventure when it is your time to go.  Been there, done that and it is amazing.

Warfarin Bleeding Episodes, Marfan Syndrome and Mechanical Heart Valves Medications

Today I learned that I need to keep sterile gauze pads in my 'tote with me wherever I go' Marfan first aid kit.  It is impossible to keep a bandaid on a tongue.

Life with warfarin, get used to bleeding. Marfan Syndrome normals.

Living a life framed by daily Warfarin doses is a challenge, we all know that.  But warfarin life is manageable when the bleeding occurs somewhere a bandaid will stick.  I really did try.  But a bandaid did not stick to my tongue.

I have been used to the persistent bruising and hard to stop bleeding cuts and scrapes.  But most of these bloody events occurred somewhere on the outside of my body where I could apply the reliable bandaid.  And I keep many in my go everywhere first aid kit.

This afternoon I was brushing my teeth after eating a dried fig.  Unfortunately one of the figs had a little stem left on it.  A sharp little stem.  A little stem so sharp that I said ouch when I bit into the fig.  But the fig tasted so good so I ignored the ouch part.  Until I went to brush my teeth.

Wetting my toothbrush I applied the Crest to the bristles and opened my mouth to clean the choppers.

Holy cow!  I looked like one of those vampires on the TV shows the teens watch, blood everywhere.  First question; Where was I bleeding?  Gums?  Tooth?  Once in a while I have a little blood from flossing but not the amount I was seeing flow down my tongue.

Mechanical aortic valves require anti-clotting drugs like warfarin (Coumadin)

Ugh.  The sharp stem.  I remembered.

Panic started swelling in my chest.  What am I going to do?  What if my tongue continues to gush blood?  I can never go swimming in the ocean again till I get this bleeding stopped!

OK.  I told myself that I had to calm down.  How do you stop a bleeding tongue from gushing blood?   I couldn't run ask Judy or the teens because if I opened my mouth they'd probably scream 'Vampire!'

The bandaid did not work, that was instantly obvious.  Then my problem solving expertise kicked in.  I thought 'sterile gauze bandaid'.  Grabbing a couple gauze packets from the closet I sat down on the floor and wedged the gauze between my tongue and the top of my mouth.  Gag! Blah! But that approach worked after about twenty minutes of gagging on a piece of gauze in my mouth.  Ugh.

Gauze is now a staple in my portable first aid kit.  Stopping a bleeding tongue is a challenge!

Thank god this happened here at the house.

Obviously it is time to go have my INR checked.

But I was going to make sure the vampire look did not return tonight - I made a broccoli smoothie.

Green vegetables high in vitamin K can quickly slow bleeding issues.  Just be careful you do not clot up your valve!

Quickly gulping the vitamin K rich liquid green I could feel my tongue bleed slowly throttle downwards in velocity.

Gulping the broccoli smoothie.  Post-dissection repair life is a challenge with daily warfarin doses.

Tonight, four hours later I can still taste blood.  I'll be sleeping with a packet of gauze nearby tonight in case the vamp symptoms return.

Finally, the bleeding slowed.  Yep, I need to scrape my tongue.  But not tonight!

Aortic dissection, mechanical valves and warfarin, the new normal.  No one to call, no where to turn to.  Figure this stuff out on the fly.  The new Marfan normal.

Ditching Most Processed Foods From My Marfan and Post-Dissection Life

Recently I have embarked on a Paleo Diet adventure.

Yummy ice cold watermelon!  Ditching processed foods forever!

It is June 1st today.  I have fallen love in with the Paleo Diet, finding more satisfaction and fullness in this approach to eating than in ANY other food pattern I have encountered.  First, let me say my definition of Paleo may be different than others.  From what I understand, the Paleo Diet mimics what our nomadic ancestors would have eaten.  Though this sounds complicated it is not.  Just eat non-processed food.  Today I have eliminated any food that for the most part does not look like its original form.  I have seen my energy levels soar, my blood pressure drop and my weight peel off.

Of course I have my cheats, such as when company arrives and we go out to eat.  Even then though I stay away from highly processed substances, especially sugars, wheats, corn, beans and dairy.

I am eating more now; lots and lots of healthy foods.

Here is my typical Paleo food day.  I am not a purist Paleo, just trying to stay away from most processed foods.

1. Breakfast - 2 cups coffee & green tea, 2 eggs (boiled, scrambled in butter or over medium), 4 slices of bacon, and a piece of fruit
2. Lunch - one avocado, one tomato, handful or almonds or several small sardines
3. Dinner - grilled salmon with garlic, kale, onions, rosemary, turmeric, and green peppers
4. Water - 2 liters
5. Snacks - couple handful of almonds, cashews or walnuts

Compare this to my old eating approach typically represented by a day such as;

1. Breakfast - 2 dried dates, small bowl of black eye peas and small piece of baked chicken breast
2. Lunch - 2 veggie burger patties & small bowl sauteed garden veggies in EVOO
3. Dinner - 2 small bowls black eye peas
4. Snack - couple handfuls of salty Lays potato chips (I know....) & 1/4 cup walnuts, couple of Nori wrapped garlic clove

Do you see the big difference?

I am staying away from high carb, processed corn and wheat products.  I am eating ocean fresh fish, grass fed beef and high quality fruits and vegetables.

Today I checked in at 175 lbs on the bathroom scale.  That is down 11 pounds in two months and 65 pound since my second open heart surgery.  And I am not hungry anymore.

Remember, always check with your doctor before changing your diet!

Post-dissection Repair Everyday Challenges, Vertigo and Dizziness

I don't want to fall so I pace myself and have learned how to look for the signs of a vertigo or dizziness onset.

Post-dissection repair cycling has its own set of challenges, but is good PT and good for my mental state too!

I am also learning to recognize some of the post-dissection repair triggers.  This is good because I do not want to fall.  Falling and cutting myself or breaking a blood vessel while on Warfarin could be bad.  As it stands I still have a bruise and lump on my left arm after a small tumble almost two months ago.  Any type of trauma where bleeding is involved can have serious results while on anti-coagulants.

Most of the time I do not black all the way out and if I do it is only briefly so it seems.  But the sensation starts with a quiet ringing in my ears and head.  Very quickly my vision goes from ok to grey out.

When this happens I need to lower my center of gravity quickly.  Sit down Kevin, sit down now.  Falling over while sitting on the ground is much easier on my body than a tumble from way up there where I usually am in a standing position.

These sessions typically occur when I transition from laying or sitting to a standing position, though they can happen anytime during the day.

I suspect that they are a result of my very low pulse rate (less than 40) and lower blood pressure than what I have been used to for most of my life (now running 110/65).  Possibly though the dissected descending aorta and the huge false lumen hog most of the available blood leaving my heart, also contributing to the dizziness.

Either way, it is the new normal for me.  I am slowly learning to deal with it.

If I feel like I a going to pass out I sit or lay down.  I just need to reduce the risk of trauma from a tumble.

Honestly, a couple of times when I was out hiking last year I got so dizzy for so long I thought I was going to the great hiking trail in the sky, sat down, held the cross and hearts hanging around my neck and waited.  But the dizziness left, like it always has so far.

Yesterday on my bike I had a similar incident and had to sit down until the vertigo and fuzzy vision left.  Falling off a bike would be bad too.  So as soon as the ringing starts in my ears and the tingling begins in the top of my head I find a nice grassy area, dismount and plop myself down.

The doctor and the medicine containers all warn of dizziness.  Yes, the whole thing is an inconvenience  but it is the new normal.

So those of you out there with seriously dissected aortas on all types of meds who live with the lightheadedness, I can relate.  You are not alone.  It is a strange new normal.

Daily Medications and Travel, Don't Leave Home Without Spare Meds!

Travel is not something I frequently do.  My body is not really up to the stress and of course, not having a driver's license, transportation is difficult if not via a bicycle or hitched ride.

My recycled travel pill bottle

But when I do go somewhere I need to make sure I have access to my medications.

Like clockwork, my heart beat begins to accelerate once the morning dose of metoprolol starts to leave my system.  Likewise with a diminishing concentration of Losartan, my blood pressure rises.  If I do not take my afternoon beta-blocker and blood pressure meds then I invite a good chance of AFib or VTach to kick in.  VTach and AFib are bad influences on a shredded, torn aorta.

Even more important is the Warfarin.  A mechanical aortic valve requires clot-free surroundings and freely flowing blood to operate properly.  Clots like to form around foreign objects inside our bodies.  Warfarin helps protect me from valve issues by mitigating clotting action.

Leaving the house requires me to find my way back to the house in time to stay current with strict medication routines.  This applies to any travel away from the house, be the trip one mile or one hundred miles in distance.

At the end of the day I need to find my medicine.  My life depends upon it.

Even the area where Dr. Bates installed the Dacron graft over my ascending aorta, begins to hurt if I skip a dose of Metoprolol or Losartan.  I am not talking about a three or four pain level either, rather one much higher up on the pain scale.

In order to alleviate potential pain and panic I now carry a one weeks does of all my meds everywhere I go.  Sure I probably don't need that much with me at all times, but having  a 'safety net' of spare meds alleviates potential panic.  Panic generates adrenaline, something I don't need with a dissected descending aorta.

I've been carrying these spare meds around in an old prescription pill container.

There are probably nicer or better spare end cases but I like my old pill bottle.

Just knowing my magic pills are there, inside the plastic bottle is a comfort.  When I leave the house without them I always immediately find a way back home to retrieve them.  I honestly can not imagine not having them with me, even on a short trip across this side of town like a walk up to the corner library.

Just shaking the container and hearing my pills rattle around inside is often the only thing I need to do in order to slow my pulse down.

Sometimes something so seemingly insignificant and little can really make a difference in the quality of life for people with disabilities, like myself.  

Getting Through A Connective Tissue Disorder Day

My embolistic hit brain needs things laid out clearly or panic, vertigo and unending uneasiness set in.  I sit down then, put my head in my hands or lay down under the window and become immobile.  At least I want to.

My Connective Tissue Disorder Life Day-Bloom

Many times the lack of clarity leads me to wander around the room or house through a confusing mental fog.  I need structure and order during my day.  I need an easy to understand roadmap that helps me keep moving forward, something to held avoid the confusion stroke related dyslexia and ADHD brings.

So when I lay awake at night staring at the stars out the window, I see my day and my week and the year in the form of a big circle, like a clock, probably due to looking at clocks now for fifty seven years.

Even fresh ground coffee in the French press does little to clear out the fog.

But pictures so help.

Since I love flowers I thought I would take the 'clock' concept of a day and turn it into a blossom, a bloom, a 'day-bloom'.

I have printed my day-bloom out and attached to the kitchen refrigerator.  The kitchen refrigerator is an important place to me because it is where I usually end up after wandering around wondering.

When I open the stainless door a flood of bright light rolls out of the cold ice box.  I usually stand still for several minutes mesmerized by the potential snacks and cold air enveloping my feet.  Then the thought of sardines in the pantry and the humming sound of the refrigerator compressor kicking in shakes me out of my zombie like state and I shut the door.

Now my day-bloom will be there, right in front of my face to remind me of what I think I need to be doing.

Yesterday while riding in the vehicle with a friend I kept falling forward and couldn't keep my eyes open, probably because events of the last couple months have given me an excuse for not focusing on my day-bloom schedule.  Remembering the doctor has told me that my number one job was to 'stay alive', I am going to try and stick to consistent physical therapy, exercise and rest.

Using pretty pictures is more fun than a bulleted list.

I can't even seem to keep my eyes open to write this post and it is only 10:20 am.  Struggling with the side effects of the meds controlling a barely beating but loudly beating heart when it is behaving is tough.

Now, life seems like  it may contain only a few really important things; like family, friends and Love.

My day-bloom reminds me of this.

Even when I do not have my reading glasses with me.

Because I can see the hearts and the smiling sun.  And one more smile for me.

Magna Cum Laude and Off to College, Daughter With Marfan Syndrome Overcomes Challenges

Jincy received the Magna Cum Laude award last night during her Mantanzas High School awards ceremony.  It brought a tear to my eye.

Daughter with Marfan Syndrome Graduating Magna Cum Laude

Although she is just seventeen, turning eighteen this summer, she gives me and so many others inspiration each and every day.

After dual enrolling in college while a junior and senior in high school, she faced academic challenges, but despite being several years younger than other students Jincy went on to achieve almost a 4.5 GPA where 'A' = 4.0.

This was notwithstanding the fact the fact that she was right in the middle of her dad's long, hard post dissection recovery period with multiple heart surgeries.  She subsequently learned that her and her brother's aortas were not only beginning to dilate but that she was also faced with other quite difficult Marfan Syndrome health challenges.

Jin volunteered with the Humane Society, working with homeless dogs and cats throughout her late teens, worked with orphans in Honduras and volunteered with Marfan Foundation benefits like the Tommy Tant Surfing Classic held every year in Flagler Beach.  She wrote poetry, taught herself guitar and ukelele and cleaned her elderly grandparents house.  As of late she has been a 'mother'-big sister to her teen nephew and niece whose mother recently suffered a brain aneurysm and has always tried to advocate for disadvantaged groups of people, no matter what their issues were.

Sure, she showed her spirit in ways I did not approve of, like the time when she climbed out her window, leaving a bunch of pillows under her bedspread and a pumpkin pie under the sheet for a strange looking head and face.  She climbed up to the top of our two story house when two years old, seriously frightening her mother and would take off as a toddler, crawling straight out into the ocean waves.

I envy her youthful and unquenchable zest for her adventures and life ahead, around the corner.

She wants to major in Communications while attending University of South Florida (USF).  Her studies will continue to be a challenge for her and she will need to work hard to support herself economically as well as academically.  I am thankful USF is providing as much help as they are.

But she can do it and the desire to overcome her challenges is what fuels her drive and successes.

I am so proud of her.  For now she has showed those Marfan challenges just who is boss.