Life, Trauma, Bikes, Mosquitos and Marfan Syndrome

Not having a driver's license is difficult.

Yep not having a driver's license is traumatic.  Automobiles have made the world such an easier and more convenient place to live, especially when one runs out of medications late in the evening and Florida mosquitos are out.  But now, my options are walking or riding the bike up to the drugstore.  And so afterward, though exhausted, I feel like I accomplished a bit of exercise.  But while some think the saying, 'that which does not kill us makes us stronger' is true, I would say the quote is silly.

Sometimes we think that going through our our trials make us stronger.  But cause and effect is not the same as co-occurrence.  I am not able to survive my dissection because of the trauma's hardening effect on my body, rather I am able to survive Despite my dissection.  Riding my bike late at night may provide some cardio but it also increases the chances of being hit by a car, infected with mosquito borne illnesses or dropping off the bike because I did too much that day.

Understanding 'this' is hard until one actually experiences the life and challenges of a chronically disabled or ill person.  In reality, ongoing trauma does not make one stronger.  Chronic trauma (physical, spiritual or mental) actually breaks an individual down more than it builds them up.  Persons with connective tissue disorders like Marfan Syndrome, EDS, LDS or Aortic Dissection would be super hero types if chronic trauma made them stronger.  Riding that bike late at night hurts when I am already tired.  Though the fresh, cooler air is refreshing, the mouth full of bugs is gritty tasting.  Spit bug bones inevitably fly back up under the helmet or across the face.

The same holds true for a chronically ill person's spirit.  Pain does not begat healing.  We don't see hospital nurses and doctors running around with torture devices (usually) trying to heal our physical weaknesses.  As a general rule most in the medical field give compassionate healing.  We see mothers nurture new babies so they will grow strong, not typically slap them around to prepare the babes for life.  I find peace for my soul sitting in the sand, at the edge of ocean's surf far away from the evening news. Jesus is quoted as saying something like, 'I am gentle and humble in heart, and you will find rest for yourselves.'

Sometimes a physically healthy person may think, 'I know I would succeed, and make the best of it if I had their physical challenge'.   I have even heard some scowl and say 'if only they had stronger faith'.  However chronic trauma of any type never builds a stronger individual.  Chronic trauma tears apart and wears down.  This is why most people today choose to join an air-conditioned workout gym with music playing over the speakers rather than work as a laborer in the fields.

Many of my friends across the world with torn bodies face trauma everyday.  They look for peace and healing, not more trauma.  Without a doubt I would be probably correct in saying each of them makes more progress with therapy that challenges but is not painful.  For me walking with an ocean breeze in my face is healing, for other's it may be working in a therapeutic garden or even walking to an urban common area and playing checkers or just sitting and chatting.

F. Hartmann - Photography by F. Hartmann in Basel. Public domain due to age of photography. Scan processed by Anton (2005)

Perhaps Nietzsche's understanding of life with trauma would have been different if he'd been swallowing gobs of Florida mosquitos and maybe smiled for his portrait.  My life would be less traumatic if I had my drivers license back, but don't tell my bike.  And even though I scowl at the thought of bug jerky and that shrill ear buzzing while I ride, the sense of adventure, of doing something different floods my soul and I am glad I rode the cycle.  It is all just life.

Connective Tissue Challenges, Learning to Live All Over Again

Someone started a rumor long ago that says you can't teach an old dog new tricks.  I say, "it depends on if they have a connective tissue disorder and how bad that dog wants to live".

Living with a dissected aorta - my descending dissection #Marfan

My present mission is to stay alive at least long enough to see my two teens able to support themselves and to enjoy life with my wife, Judy. That is pretty significant incentive.  I sure hope this is possible but I have to be honest and say that each day I wonder if I am going to be able to make it or not.  There are so many common, every day things that can seemingly push me towards the final edge.  

Living with a dissected root to foot and up into my kidneys, aorta and a HUGE false lumen that floats around inside the main blood vessel, requires me not to strain, lift or otherwise exert myself.  Surprisingly this is much harder than it sounds.  You'd think, OK, just don't lift or strain too much.  Yeah, right.  Open this peanut butter jar for me.

It is not the hour long weight lifting outings or intense home remodeling or green roof construction activities that I've already given up that present those unexpected aneurysm dangers.  Rather, it is the little things in everyday life that I have the most problems with.  Unfortunately I don't find out about just how I am hurting myself until after the fact and my chest starts becoming tight and my aorta begins hurting again.

After living with a Dacron graft and St. Jude valve for two and a half years I am still learning new tricks.  This dog has finally come to realize that there is no going back to the old way of type A living.  Today's life is centered around measured movements, cautious exertions, decreased activity duration and cardio instead of anabolic muscle approaches to exercise.

Tightness, aching and jaw, chest and back hurt are all still fresh memories haunting everyday life.  I never again want to experience the unzipping feeling radiating down my body as the intima wall separated from the other two aortic layers.  Today, I have very similar pain events occur out of the blue, though nowhere near as intense, whenever I put stress on my cardiovascular system.  So I have to learn to avoid cardiovascular stress of any type.

But these 'instigating events' sometimes are activities one would never expect to be potentially responsible for a future dissection or aneurysm.  Simple stuff, like taking the garbage out or moving a piece of furniture (hey dollies were invented for a reason).

Today I know I can no longer jump up from the couch and hoot or holler when a sports game is on television.  In fact, after the last few college football seasons and the Florida Gator's not so stellar performance (but hey, Go Noles!), I do not even turn on the television to watch games.  In fact I do not turn on the television at all.  There goes a bunch of cardiovascular stress out the door.  Now I blog.  New trick.

Today I must watch myself when sneezing or straining on the toilet.  Too many people have kicked the bucket on the loo; even some very famous people.  Thanks to daily organic psyllium fiber all things run much more smoothly now.  Yet the sneezing can't be avoided.  I just hold my chest tight when sneezing though I am sure that clasping my chest tight is not going to hold my pulsating internal supply hose together if the sneeze is big enough.  

Today I can't work on my bike like I used to be able too.  One of my pedals needed replacing and as I tried to loosen the proper bolt with an open ended wrench I felt that old familiar pain returning.  Stop, take a deep breath and think.  I must learn new tricks.  I can not strain like I used to.  My teenage son though can help me and the use of cheater bars and levers can make the job much less stress intensive.

Today I can not jerk on weed eater or lawn mower starter handles.  Upper body rapid upper chest movements while straining are a trigger for dissection according to Dr. Lars Svensson.  But this old dog here has found that today's electric weed eaters and lawnmowers are, especially with their 56V batteries, amazingly capable, lightweight yard machines and best of all they just require a button's push.

No more working on the car, but it is time for the teen son to learn anyhow.

Those darn random firing red-light camera flashes used to send adrenaline surging through my body causing the blood pressure to soar when I was driving.  Now, without a driver license I don't have to worry about keeping my eyes on the road.  No more gripping the wheel so hard the veins on my neck stand out.  No more yelling un-intelligible, sloberish words out the car window and hitting my head on the frame as I offer up evil hand gestures.  Much less stressful to walk or ride a bike.

No more scuba diving into caves.  Sometimes I wonder about the summer before I dissected.  I was diving in a tiny vertical cave shaft well over one hundred feet below the surface with hardly any room to even turn around.  Or those times I would free dive down into the west sink in Promise Sink, swim through the connecting cavern about forty feet down and come back up in the adjoining east spring.  Or those times in Peacock Springs where we'd dive straight down through fifty feet of zero visibility algae blooms to finally break out into a crystal clear basin full of alligators resting on the bottom of the cave opening.  What a rush!  And my aorta held.  Lucky I did not dissect underwater.  Today I lay on the beach and watch flocks of prehistoric pelicans glide seemingly motionless overhead, a much easier cardiovascular activity than equalizing pressure in one's head underwater or becoming tangled up with a dive partner scrambling away from large underwater reptiles.

No more eighty pound bags of cement.  No more forty pound bags of compost.  No more ten pound bags of ice.  Doctor says two pounds max.  Ugh, this is a challenge.

But the cheater bars (a long hollow piece of metal used to gain leverage - not a place to find alcoholic beverages or wild women), levers and teen help works.  The teen's echo shows dilation has started though, so the teen help will be limited and cautiously monitored.  This old dog is learning some new strategy.  Will it be enough to keep me alive?  I think where there is a will there may be a new trick.  

Connective tissue challenges might cause all sorts of hullabaloo but they also present all kinds of opportunities for learning to be creative.

So for all you out there with special challenges, Be Elite.  b31337.  We are the magicians.

My Dissected Aorta Loves A Dollar

A most wonderful dollar bill exchanged its existence in my wallet for a pill case.  Greater love for me hath no other dollar.

Medication Organizers are inexpensive but so helpful!

 Finally, I purchased a weekly pill organizer from the Dollar Tree for, yes you guessed it, for that folded one dollar greenback.

And it has so helped with my stress levels and panic episodes.  I should have listened to others and bought one sooner.  But I usually have to learn the hard way.  Sometimes I wonder just what I could have accomplished in life if I had really listened to others, learning from their similar experiences.

But no, I have never much listened.  I have been destined to repeat that which I could have avoided.  Perhaps though learning by experience is part of the human curricula. I know learning the hard way is the path I usually take.  Yes, I kinda enjoy experiencing the challenges for myself.

I can't begin to tell you how many times I have wondered and worried, before I spent this dollar.  Did I take my medicines?  Oh oh, I can not remember if I did but it looks like there are fewer pills in my pill bottles.  Frequent episodes like these always sent adrenaline surging through my cardiovascular system.  Not a good thing for those of us living with a dissected aorta.  Especially when there are so many, so very many pills to swallow.

Medication Memory Issues Resolved! #Marfan Syndrome

Hallelujah! Now with my one dollar pill organizer I feel like all the things falling apart from my connective tissue disorder issues might just start slowly become put back together.  No, the plastic box won't heal my root to foot dissected aorta but it might mitigate heart seizing surges from wondering if I've swallowed the colorful tabs or not, and that might prevent a stress-related cardiovascular incident.

That spent George Washington grew so big in size, and in my mind is now more like a security blanket rather than a small folded piece of paper now in a who knows where cash register drawer, purse or wallet.

I should have listened and bought one several years ago.

Maybe I was waiting for just the right dollar bill to spend.  They say we shouldn't love money.  Where ever you are George, I love you….

Kevin's Primal Pineapple & Nut & Chocolate, Almond & Coconut Flour Cookies - Cardiovascular Healthy!

OMG!  These primal treats are so delicious and healthy.  And I don't mind the two remaining teens eating as many as they want.

Kevin's Primal Pineapple, Almond & Coconut Flour, Dark Cocao & Nut Cookies

But unlike those junky industrially fabricated cookies you get in packages at the store, these are so filling that you really only can eat one, maybe two.

And there is no sugar crash afterwards - only fat burning and muscle building (look out Atlas!). Lol.

Low carb, good protein and high quality fats.  Eating primal can be fun!

I know because I am typing this blog post after having baked a dozen and eaten one.  I actually feel energized.  Feeling energized while on high doses of beta-blockers and a myriad of other meds is unusual.  Sometimes I actually wait and wait and wait for my heart to go ahead and beat again.  But these treats kick my pulse up and are good for my liver and kidneys.

My kidneys are about shot because of all the contrast dye from multiple CT scans.  In fact I went into serious renal failure after my second open heart surgery.  Ugh.  So I do not handle sugars or high glycemic carbs very well.  However today, I wanted a quick and easy treat - but not one that would hurt me.

Publix has an excellent selection of 'alternative meal', including coconut and almond meal

Lately I have been removing most all processed foods from my diet, and instead eating good proteins and high quality natural fats - you know, trying to eat healthier.

I feel so much better from doing so.  Post second open heart I weighed almost 245 pounds or so.  Today I am down to the mid 170s.  My goal is a BMI of between 20 and 21 and I am almost there.

Yummy, 'almost totally' Primal-Paleo dark cocao

Hey today is Sunday and the two grand teens have returned to Tallahassee to live with their mother and next weekend Jincy is headed off to college orientation.  Me and the fam need a healthy treat today.

Earlier I rode my bicycle up to the market, selected a few 'primal'-'pale' ingredients and came home to whip up a batch of good-for-you cookies. OMG, they are so delicious!

Eating Primal has helped me remove inflammatory substances from my diet - Good for my Heart!!!

Here is the recipe:

Kevin's Primal Pineapple & Nut & Chocolate, Almond & Coconut Flour Cookies

Preheat oven to 350F

Mix 1 cup organic almond flour and 1 cup organic coconut flour in a mixing bowl.
Add 1/2 teaspoon baking soda & 1/2 teaspoon sea salt.
Stir in three brown eggs and 1 teaspoon organic vanilla extract.
Drain and mix in 10 oz organic crushed pineapple with no sugar added.
Add 1/3 cup organic coconut oil.

Mix well with a fork and press into small cookies on a cooking sheet prepped with organic EVOO.

Decorate with organic 85% Dark Cocao and your favorite nuts (I like pecans, cashews and macadamia nuts).

Bake for 12 minutes or until golden.

OMG.  What an awesome, filling treat full of protein, good fats and a few low glycemic carbs.

I love eating primal.  Natural foods make me want to stand out back and beat my chest like Tarzan.  But I don't do this chest beating because it might aggregate my existing dissected aorta challenges.  Instead I smile and lick my lips and growl like Tarzan.  And lick my lips again!

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!