Kidney Health and Marfan Syndrome - Processed Food Challenge

O.K. Here are two more items I am booting out of my diet and medical regime.

Marfan Syndrome, kidney health and processed foods.

Oatmeal and Emergen-C are gone.  Yep, I was just as surprised as you are right now, but let take a moment and quickly explain why.

First of all I am not suggesting anyone eat a certain way.  My diet is special and so is the information here on this blog.  What works for me may not be right for you.

Because I went into renal failure during my open heart surgeries, I have to really treat my kidneys with special care.  Learning about a renal diet has been a challenge, what foods to eat and which ones to avoid.  It is all so very complicated but important, for without my kidneys functioning at their present level I could end up on dialysis.  Yep, dialysis is right around the corner for me possibly.

But I never received any real help from the myriad of doctors who treated me over the past three years when it came to learning what foods to eat and what grub to shun.

My cardiologist did comment on the Coca-Cola I was drinking one day during an office visit, telling me I must avoid dark sodas at all cost.  He went on to explain that the dark colas contain forms of phosphorous and that any drink with 'phos' in any form in the ingredients was bad for my kidneys.  For that matter, anything at all that contains a 'phos' for an ingredient should be abstained from, warded off and shirked.  I never did mention to him that it was his nurse who gave me the dark cola.  Today though I do avoid all sodas, dark or clear as the National Kidney Foundation recommends!

Sugar in any form hurts my kidneys.  Sugar and salt are two of my most hardest for substances to avoid, primarily because I like their taste.  It is easy for me to tell when I've had too much of either.  Excess salt raises my blood pressure almost instantly.  Sugar makes me very, very sleepy - almost comatose-like.  I don't need to read a medical textbook or have a doctor tell me when I've eaten too much sugar or salt; my body tells me loud and clear.

So the other day when I noticed I was getting sleepy after a dose of my favorite vitamin C powder - Emergen-C I read the packet's ingredients.  First on the list was fructose.  Good grief!  No more Emergen-C.  I thought I was drinking vitamin C, turns out I was imbibing mostly fructose. Sugar, sugar, sugar.  Ugh.

Now for the hard part.  Everyone has always told me oatmeal was good for me but lately, after eating Judy's homemade granola containing mostly old fashioned oats and very, very little processed sugar - she uses dried fruits to sweeten her granola - after a small handful of crunchy granola the same sleepiness would sweep over me.  Yawn.  Here comes an insulin spike.

As usual Mr. Google pointed me in the plentiful information path and my mouth fell as I read article after article about how oats cause insulin spikes and are really not so good for many people's blood sugar issues.

Finally, I am beginning to listen to my body.  Most of the time I know when a food or medicine is not good for me long before I read about it on Google.

Avoiding added processed sugar and those foods with glycemic indexes affecting my insulin levels and kidneys is really easy if I watch for the comatose feeling after ingesting the substance.  I knew even before reading about oatmeal that it may not be good for my kidneys because of the way the oats made me feel.

Yes I know oatmeal is full of fiber and has a lower glycemic index than other cereals.  Too bad.  Broccoli and many nuts are full of fiber and don't hit my bold sugar the way oatmeal does.

So goodbye to two more old friends.

If I could just stay away from processed foods……..

Eliminating Processed Foods from my Heart Healthy Marfan Syndrome Lifestyle Diet

Knowing what you need to do and doing it are two totally opposite actions.  I know I must avoid processed food if I want my body to continue to function.

Oh no! My favorite fish is loaded with ugh fructose corn sweeteners!

But as I am writing this post about the importance of eating not-toxic, un-processed, real food that even looks like real food, well….I just finished off three fig bar cookies (hey….Aldi foods sells them for $0.89 a package and they are loaded with high fructose corn sugar (HFCS)).  I know it is important that I give up HFCS.  I know this in my brain.  But my brain does not always carry majority rule over my tongue and my mouth and my belly.

Dylan, our teen grandson who is living with us while his mom recovers from a serious brain injury attends the local jiu jitsu dojo most week nights.  His instructor and I were talking about diet the other day and I really, really agreed with his statement, "everyone has to have their cheats".

My cheats today were the three fig bars.

Seriously, I am proud I stuck with food that looked like food today.  Except for the fig bars.

I ate nuts, oranges, greens from the garden, chopped okra, cooked beans, garlic, a couple pears and a can of sardines for breakfast.  The sardines were very, very rich in fish oil. So rich in fact that hours later when Dylan came home from school he asked me, "Papa K, did you eat sardines today?"  So despite scrubbing my teeth, gargling with peroxide and flossing, the fishy smell still lingered.

Sardines and fishy smelling fish are full of important omega three fatty acids.

A small handful of walnuts each day is always part of my omega three purposeful diet but the walnuts do not pack the omega three punch strong smelling sardines do.  Herring has long been another  favorite fish dish.  I especially love(d) Vita Herring in wine sauce and  in sour cream.  OMG.  Melodious waves of joy and ecstasy would roll across my tongue at the first fishy bite.

But no more.

You see, I have started reading labels and this has led me to some seriously sleepless nights lately.  I am finding out what I am really eating.  And most of the processed foods I am eating, no matter how healthy the labels look, are filled with chemicals and MSG and HFCS and other fabricated compounds right out of a show like the 'Twilight Zone'.

I knew this years ago but my tongue and stomach and mouth kept vetoing my brain's attempts to boycott these processed foods.

Unfortunately I am finding that if a food tastes really, really, really tasty then either MSG or HCFS are present.

I was very afraid of reading the labels on my Vita Herring because my brain was in no mood to piss off my tongue, mouth and stomach.  But I read the labels and sure enough they were full of high fructose corn syrup.

Sadly, I usually do not change habits until I have to.  And so it was with my Vita Herring.  A while back I started noticing my blood pressure spiking after I'd eaten my Vita, my systolic hitting the 150s.  150 systolic is way too high for someone like me with a dissected descending aorta.  In fact, systolic that high is deadly for me.

My brain knew the overload of HFCS was to blame but I tried eliminating every other food I'd been eating recently with no luck.  So I read the ingredients again, just to be sure.  HFCS was a major ingredient.

So I threw my Vita Herring away.  And I cut out all the HFCS and MSG out of my diet (except for those three fig bars today).

Within a week my blood pressure had returned to a normal range of 110/55-120/60.

My brain finally won the vote.

Yet this means that I've had to eliminate almost every processed bit of food from my diet.  No more ranch or blue cheese dressing.  Too much MSG.  No more fig bars.  After today.  No more ketchup.  No more delicious buffalo wing sauces.

I am going primal.

I knew I had to do this all along.  Friends urged me to do this for years.

The only reason my brain has won is because I really, really want to live.

Processed foods are so addicting.  We live in a world today where slow death by toxic food is an accepted norm.  My tongue, mouth and stomach are laughing at my brain for thinking this.

Florida Green Roof and Living Wall Plant, Cape Honeysuckle, Tecoma capensis, Amazing Intense & Brilliant Orange Color

Here are a couple photos from an amazing living wall vine, Cape honeysuckle, Tecoma capensis with super intense, bright orange blooms.  

Florida green roof, living wall plant Cape Honeysuckle, Tecoma capensis, Daytona shopping mall

If you love orange then this living wall vine is perfect for you.

Florida green roof, living wall plant Cape Honeysuckle, Tecoma capensis, bright orange blooms

Cape honeysuckle is not native to this area so please take this into account when planting or using in a landscape.  We always first and for most recommend the use of native vines for living walls where possible.  Cape honeysuckle does exhibit some aggressive growing tendencies but the species is not listed on the Florida Exotic Pest Plant Council's invasive plant list (yet).

This vine based wall was covered with pollinators the other day!

Florida  living wall plant Cape Honeysuckle, Tecoma capensis, Daytona shopping mall another view

It appears Cape honeysuckle is very drought tolerant.  

The vine has reached out and begun to wrap around adjacent hardscape so we'd recommend regular pruning to keep the plant neatly trimmed in place.

 

Florida green roof, living wall plant Cape Honeysuckle, Tecoma capensis

Living walls are so very beneficial to the community, delivering;

• a cooling of Urban Heat Island Effect
• cleaning and treating storm water
• sequestering carbon dioxide and carbon
• lots of fresh oxygen on a daily basis
• beauty and creating a sense of place
• communal and foraging habitat for birds and wildlife
• integrative pest control
• and so much more...

What an amazing display of color! Cape honeysuckle's ability to create a stunning living wall of green and orange certainly deserves recognition for eye catching artistic beauty.

Green Roofs Design for Coastal Projects, Florida Green Roofs

Just a quick note this morning.  Nature is the very best teacher about all things #GreenRoofs.

Learning Green Roof Design - mimic Mother Nature, learn from Her

We are working on the design of a green roof for a structure along the seashore.  I learn so much from each site we work with; yes, from the site itself.

Spending time sitting, walking, watching, listening, hearing, feeling, understanding your project's surroundings and immediate ecosystem is one of the best ways to understand the design variables you must consider when planning for a green roof, regardless of the project's location.

Book learning is always good.

But knowing your site is better.  Sit and watch the wind blow through those plants growing on your project's site.  Get a feel for how the sun shines on each different species.  Look for water impacts and sources.

Nature is the very best #GreenRoof teacher around, and best of all she does not charge tuition, she just requests you listen, smell, touch, taste and embrace.

Writing My Own Obituary - What An Experience!

I wrote my obituary this week.  Yes,  it seems mostly what is written here lately has been focused around disease, dying or death.  But I am trying to get all things in order so I can turn to the fun stuff on my bucket list.

Kevin Songer's Obituary

Blah!  Who wants to write their obituary?  And the process was actually quite depressing, especially as I was trying to get started.  But the obituary writing process got easier as I wrote and thought and thought and wrote.

In fact, at first I initially felt an overwhelming and revolting sense of 'why even do this?' sweep over me like one of those big, unexpected Flagler Beach waves that crashes over you, sloshing salty water up into your nose, eyes and down into everything else attached to or part of your body.

'Yuck! Ugh!'  My right knee started it's shaking up and down while I sat trying to paint words on the blank screen with the Apple keyboard. 'Where do I start?'

Thank goodness for Google.  Type in 'SAMPLE OBITUARY' and right away a number of free self-help sites come up on the screen.  Cutting and pasting was easy and there it was - my roadmap outline to my own personal obituary.  All I had to do was fill in the blanks.

The other day I posted a note about visioning our lives as a mural we are painting each day with our actions and deeds. I was hoping my life's mural would be filled with love and joy.  As I was writing the obituary I could see that the words being penned were actually a reflection of my life's mural, but created with a pallet of words instead of paints.

My first thought was to fill it up with all the details of my accomplishments, all this this and thats that no longer meant a whole lot.  Turned out all the theses and thats was way to boring.  So I deleted all the accomplishments and focused on family and friends.  The obit was looking better with the 'family and friends' approach, but with a 'his' and 'hers' Brady Bunch clan there were a lot of names and I did not even get to the grandchildren.

As I wrote I began to feel a big sense of relief, like finally coming up out of that salty wave and taking a deep breath of fresh air and feeling the warm sun across my skin.

And I was so proud of myself!  I had to tell everyone about what I'd done, including my mother and father and even asking my teen daughter, Jincy to read over it!

Does that should way too morbid?  Maybe so, but somebody has to write an obituary for us.  In my efforts to try and have everything organized before I go, the obituary was just another item I can check off of my 'to do list' so I can get to my bucket list's fun stuff.

Just like a will and a funeral plan, everyone should go ahead and take care of their own obituary.  It actually may help keep your children, or spouse, or whoever you leave behind from having to tell all those little white lies when they try to think of what to say about us.  Ha!

Minor edits have already crept in and I am sure that over time the text content will evolve and does my life.  And I certainly hope not to use it anytime soon!

But the words have kind of fashioned my time here on this planet with these people into a manageable mouthful of verbal art that hopefully reflects my life's mural, something tangible I can carry around with me like my name.  Something that can help guide the rest of my life maybe and give me cause to stop and consider how people will really remember me, something right out of my Facebook page - lol!

So here is my draft (Yes!  DRAFT - not to be used anytime soon I hope) obit.

Hope it inspires you to write one too. -

----

Kevin Shea Songer, (Age)

Kevin Shea Songer, (Age), died (Month and Year, 20xx), in his home in Palm Coast, Florida.

He was cremated. A service was held Friday at Princess Place Preserve in Flagler County, Florida.

Kevin was born March 24, 1957, in Atlanta, GA., to Louis and Paula (Morrow) Songer.  He grew up in Hialeah, Florida, attending Meadowlane Elementary and Palm Springs Junior High in Hialeah and his family was active in the Hialeah Church of Christ.

He graduated from Leon High School, in Tallahassee in 1975. He married Judy Marie Songer on April 5, 1995, in Crawfordville, Florida.

He held an undergraduate biology degree after attending Florida State University and David Lipscomb College and also a Juris Doctor of law degree from Florida Coastal School of Law.

Kevin survived an aortic dissection in November 2011 and spent the rest of his life medically managing his descending dissection and related Marfan Syndrome challenges.

He enjoyed nature photography, Florida’s state parks, hiking and cycling with his wife and spending time with his children and grandchildren.

He actively blogged about green roofs and life with Marfan Syndrome.  His blogs are located at http://kevinsonger.blogspot.com and http://aorta-tear.blogspot.com

He leaves behind his wife, Judy Songer of Palm Coast; brother, Scott; sister Leisa of Tallahassee. brother Brian of Indiana; children and step-children include; Jincy Songer and Ruairi Songer, Dana and Jared Neal, Sesha Castagna, Kyndra Griffin, Melissa Cummings, Leslie Ferguson, Laura Griffin, Adam Griffin and numerous grandchildren, and many friends across the world who share a passion for green roofs and also those challenged with connective tissue disorders like Marfan Syndrome.

Kevin was preceded in death by, his sister Janna, a granddaughter, Heidi Ferguson; (and if any others).

Lohman Funeral Home of Palm Coast, Florida was in charge of arrangements.  Remembrances can be made to The Marfan Foundation, http://marfan.org 

Measuring Green Roof Wind Impacts, Low Cost Anemometer

Anyone who has read my posts here know I am a firm believer that the two most significant impacts Green Roof plants may encounter on a roof are light and wind.

Here is a short video on how to make a low cost (and quite pretty) anemometer for assessing daily wind speeds across the location where your green roof may be installed.

For more information concerning wind impacts on green roofs check out additional posts on the blog under the topic 'wind and green roofs', including http://kevinsonger.blogspot.com/search/label/wind%20and%20green%20roofs

"If You Want To Live You Must Walk' and Honk Honk to Cardiovascular Health, Daily Marfan Life

Yesterday a beautiful 57 Chevy pulled up into Autozone store a mile away from our house as I walked into the parking lot (my licensed is still confiscated) to meet my father-in-law.

My daughter's Honda is covered to protect from the rain and elements.

Wow!  My head turned.  What a sleek looking, sweet ride she was, and I loved the light blue paint, shiny chrome, lack of rust and smooth purring engine.

"Man!  Her owner has babied her.  That car is in puurrrrfffeccct condition," I whispered, not worrying if anyone heard me talking to myself because everyone else in the parking lot was saying the same thing, talking to themselves too.

My father-in-law's Lincoln was not in the parking lot yet so I walked over to the owner and complimented him on his Chevy and said something about his car and me having the same birth year.

"Take a look inside," he invited and I stepped off the curb carefully, with my crutch.  The Chevy even smelled NEWish, though I know for  five bucks inside the store one could purchase a bottle of 'NEW' spray; but still!!!  I was jealous.

"Was my grandfather's car," he said.

"You've really taken care of her, she is beautiful," I replied, afraid to leave a smudgy fingerprint anywhere on the vehicle, especially since I'd been wiping my runny nose on my wrist as I hobbled  along the way to the store in the damp, drizzly cold.

"Yeah, she's fun to drive but a lot of work."  He emphasized the term 'a-lot' with extra punctuation.  "I've had to rebuild the engine twice and she's not used to the ethanol in today's gasoline, but she sure is fun to drive.  Keeps me busy too, keeping up with all that needs to be regularly done to keep her in shape."

I thanked the gentleman, who appeared to be about ten years older than me and walked into the auto parts store to wait for PeePaw.

After helping my father-in-law pick out a couple of car covers for my brother-in-law's cars (my brother-in-law is in the Army Reserve), I made my way over to the adjacent CVS store for a small pack of salted pumpkin seeds.

Today I am paying for eating the salted pumpkin seeds but yesterday they sure were tasty.  Salt and I do not get along.  My heart and blood pressure hate salt.  My tongue loves salt.  It is a constant battle with no clear winners.

A mile with a forearm crutch, bottle of water and small pumpkin seeds is tough if you are trying not to look like Hansel in the fairy tale.  Someone could have clearly tracked me with a bright white salty pumpkin seed laying here and there on the side walk every five feet or so, but the herd of squirrels running behind me quickly took care of the trail's evidence.  

Anyway, I'd torn the pumpkin seed bag the wrong way when opening the plastic sack.  Trying to keep the slick seeds in the sack and not emptying into my lint lined pants pocket, trying to hold the ice cold sloshing water and trying not trip over my forearm crutch was a challenge.  I told myself, "this is true disability, Kevin," and immediately felt better after hearing the words of pity.

But in-between the seeds and sips of water I had about forty five or fifty minutes to think about the Chevy.

And it hit me!  Maintenance and keeping up with any car is so important to making the vehicle last.  Back when I was driving I'd jump into the car each morning and expect it to race down the street, clean itself, change it's own oil and fill it's own gas.

But if I'd taken an hour or so each day (maybe two) and pampered my first car, a 1967 Ford Mustang GT, three speed on the floor with bucket leather seats and a 289 V-8, well, my very-hot car might still be around, though without my license it wouldn't be fun as often.

Sheeeez.  An hour or two each day?  Who has time for that kind of maintenance and the Chevy owner did say that even with all the daily maintenance he still had to replace the engine twice.  Yet he did have a beauty of a car.

So another dome light clicked on above my head as I continued along the sidewalk. We tend to treat our bodies (I am speaking about myself now - I know you out there are better disciplined); we tend to treat our bodies like many of us have treated our cars.  We expect performance without the truly needed maintenance.

We wake up first thing in the morning with a rush of adrenaline, without a prayer or any meditation.  We jump and run without warming up or stretching or even bathing and brushing our teeth.  We deny ourselves a daily buff out or vacuum and fill our tanks with gummy regular instead of premium, organic high-test or even clean water.  Our tires are almost flat and our carburetor is clogged.

And so our bodies, like our old autos develop problems and we no longer look like the pretty Chevy with the curvy trunk and shiny headlights.

Instead we find ourselves, like our cars;

• leaking fluids everywhere.  Drop by drop first, then dribbling everywhere we park;
• our electrical system starts to crackle and sometimes completely short circuits;
• the dang spare tire gets soft, smushy and flabby from just sitting in the trunk;
• our once snazzy upholstery becomes faded and wrinkled;
• and our used to be silent muffler, toots, booms and blasts when we least want or expect it to;
• as our young paint job fades and spots begin to appear we plaster ourselves with Armor All, and the silicone really helping for a short time;
• our cloth covered areas develop a really odd smell, something like a cross between stale sweet potato fries and fermented green tea;
• the dang struts squeak, sound boinky and have forgotten that old smooth glide;
• fuel injectors act like they are clogged with carbon deposits from years of cheap gas;
• old nuts either rust up or break and fall off;
• and we can't keep the dang rear mirror up, the thing keeps falling down in our laps when the car hits a bump;
• that once polished gear shift knob has lost it's original luster and becomes worn from being pulled and pushed back and forth every day;
• and finally, our dome light becomes dimmer and dimmer with each passing day.

I mean we can end up in a junkyard at the end of the day or we can end up in a museum or well lit garage, just like our cars do.  It all depends on how well we take care of the vehicles and our bodies.

As I turned the corner into our neighborhood a small white pickup truck was parked in the first driveway to my right, covered in leaves, obviously having not been driven in a while.  But it WAS covered in beautiful Florida red maple leaves and not wrapped with a synthetic, plastic-like car cover.  And there was a lovely cardinal perched on its bed, chirping away in the cool mist.

I whipped the drizzle from my forehead, pulled the hoodie a little tighter and frowned, thinking to myself. "Do I really want to be stuck in someone's garage forever, covered up and only seeing the sunrise once in a while?"

I was almost back home now.  My doctor tells me that if I want to live I must walk.  I must walk each day despite the pain, despite having to sit and rest often.

There are lots of closed garage doors in our neighborhood.

Maybe those cars rusting out in the junkyard, piled up next to each other, watching the sun rise and set and the moon glow each day and night are really having more fun.  

I don't know.  IDKN as my kids have taught me in text talk.

IJRDNK.

Storage and Simplification - Marfan Medicine Drawer

Ugh.  More stuff.

Marfan Syndrome and Simplification

If you have been following my 'Project 100' you know I have been trying to simplify.  I want to pare down the number of things I own.  Over the past how ever many years or so the accumulation bug has happily lived and flourished in my body, embedded under my skull.  I suppose it got into my brain through the ear canal, listening to all those TV and radio commercials telling me 'I just had to have'!

Uh-oh.  Just like with the Marfan Syndrome challenge, the hoarding of stuff comes back with a vengeance when it appears progress is being made.

So I thought I was doing good.  The garage had been cleaned.  That was about another 100,000 things told to go their own way; nuts, bolts, nails and other junkets that predictabily ended up in a couple of my neighbor's sheds.

I used to love to go through trash piles heaped up beside the road down our neighborhood street.  The thrill of discovering a shower head that could be possibly repaired or an old turn table with potential was always more than I could bear.  One day when the kids were small we were all walking around the neighborhood and I spied a fabulously gigantic pile of 'stuff' someone who was simplifying (they had it figured out long before I did) had tossed out by the road for the garbage people to pick up.  After grabbing a couple of plastic five gallon pails I noticed one of the kids fleeing across the street and jumping into the roadside ditch.  Apparently some of her friends were playing outside a few yards down from us.  I do not understand tweens' fear of their friends laughing at them for dragging home perfectly good reusables.

And I still wonder if the trash people fill the area behind the truck cab's seats with goodies salvaged from their daily pick ups.  Bet their houses are decked out like none others.

Back to the topic at hand - the bathroom medicine drawers.

My stay on topic attention capability has suffered greatly since the open heart surgeries.  I know I've already written about this many times.  But people forget!  Just the other day I was over at someone's house who knows me very well and she was telling me something.  If there are more than ten or twelve words in a sentence I get lost and stop following whatever the person is rambling on about.  I mean I can not keep up and by the time they are saying word number twenty my brain is just processing word number four.

It really gets bad when the first twenty or twenty five word sentence quickly turns into two or three or more twenty five word sentences.  Grrrrrr!  I want to slap them or tell them to put s-p-a-c-e-s  b-e-t-w-e-e-n their words.  I am dealing with a serious cognitive pathway traffic jam and people just don't get it!  Honk! Honk! Honkkkkkkkkkk!

Mostly my response so far to date has just been a smile.  But this time I interrupted her and it felt good!  It felt really good to just blurt out, 'I can't understand what you are saying!'

She was immediately taken aback and frowned and shook her head from side to side in disbelief.

'I don't get it!  I did not understand anything of what you were saying,' I repeated myself just to hear the words once more.

She sighed, speechless.

I smiled.  I felt like I'd won the lottery or a national election or the Nobel Peace Prize even.

Alas, off track again.  Back to the bathroom medicine drawers.  When I emptied two small drawers in the bathroom today my estimated count of 'stuff' I owned easily doubled.  It was hard enough trying to understand the jumble of words the other day.  But the bathroom drawer jumble of pill holders, tubes, plastic this and thats, and all the other 'stuff' shocked me.  My Project 100 had just encountered another setback.  Just like those mornings when I know I've got Marfan whipped and I roll off my floor sleeping mat to stand up and my ankle or knee or back decides to side with the Marfan for some obnoxious reason, the clutter of bathroom drawer stuff totally and cruelly short circuited my brain.

What was I going to do with all that stuff?  How did I fit that much stuff in those small drawers?

Ended up I threw most of it away and put everything else in a cotton bag that is now hanging on my side of the closet.

Now we have two cleaned out drawers, a home for more 'stuff'.

What did I learn from this?  Not much that I can remember now.

Perhaps dementia's curse is compounded by being a slave to stuff that will end up in the landfill.

But every time I get rid of something else I feel a little bit more free.

And I really like freedom from complexity and from long sentences without spaces between the words.

This morning, just outside the window I sleep under, a bird was singing a most beautiful, sweet and melodious song.  The sun was coming up and warm golden colors had started to blanket the saw palmetto fronds out back.  A cool, refreshing breeze softly wrapped around my face as I sat up and leaned against the windowsill.  The first deep breath, really deep breath and slow exhale never felt so good.

I couldn't fit any of those things in the bathroom drawers.  Nor in my cotton bag.

Living Wall Plants for Florida, Carolina Jessamine

Carolina jessamine, Gelsemium sempervirens is a lovely native evergreen vine perfect for Urban Core greening if you don't mind lots (and I mean lots) of buzzing pollinators.

Carolina jessamine, great evergreen living wall plant

This vine is relatively fast growing and survives most North Florida winters.  I have found that with few exceptions, Carolina jessamine grows faster and develops a fuller, more dense habit than other native vines, such as Coral Honeysuckle, Lonicera sempervirens.

Carolina jessamine in bloom, amazing pollinator attractor

One of the first native flowering plants to bloom here in Florida, when she does begin to bloom in late January she really puts on a show with bright yellow, fragrant flowers.

The pollinators arrive in wave after wave of buzzing insects.  Supposedly the plant can contribute to bee brood death because the flowers contain strychnine-like alkaloids.  Children have been poisoned by mistaking the flowers for honeysuckle and ingesting the nectar, according to some sources.

I've never seen bee brood death tied to the Carolina jessamine's flowers but I would probably not plant this vine near where children may play or congregate.

Some of the advantages this species offers as a living wall plant include;

* good, hardy drought tolerance

* low leaf litter rate

* grows well in low nutrient and most poor urban soils

* provides great wildlife value

* supports biodiversity

* low alleleopathic influence

* and withstands strong storm winds.

Consider using this native plant for your next vertical green project if pedestrian access is limited.   Because the plant does attract lots of bees and wasps, stings are a real possibility to those standing or walking near the plant.  You may also want to post a 'no eating the flowers' sign to prevent accidental poisoning if mistaken for sweet honeysuckle by a child (hopefully the child will be old enough to read), or other precautionary measure.

Otherwise Carolina jesamine is an excellent, native plant useful for vertical urban greening.

My Distal Aortic Dissection, NIH Treatment Discussion

I added a photo of my existing dissected distal aorta to the upper right hand corner of my Marfan blog here, to remind me everyday is an important day in the battle against hypertension.

My dissected distal aorta - existing unrepaired

If you look closely at the above photo you will see two ovals in the center of the echocardiography.  There should only be one oval.

The top oval is the false lumen, or dead end ripped out channel.  The bottom oval is the true lumen or open channel in the aorta.

The line between the two channels is the intima tear - of inner lining of my aorta, ripped out from the aorta wall and 'floating' in the middle of the aorta.  This phenomena is know as a 'dissected aorta'.

The vessel walls are much weaker than a normal, non-torn aorta and are subject to rupture or aneurysm.  As stated in the article published in the U.S. National Library of Medicine's National Institutes of Health, aggressive hypertension treatment is about the only non-surgical treatment option for this condition.

Surgical replacement of the distal aorta is highly risky.  Stents are not accepted as a treatment option at this time.  My cardiologist says 'we don't want to open a can of worms', and one of my Facebook Marfan Syndrome friends recently did not make it through her descending dissection repair in Denver this last month.

I am placing this photo here to remind me of not stressing, of remaining calm, not worrying, not picking up anything over two or so pounds as my doctor recommends.

Our body is amazing.  And it continues to function sometimes even when the 'experts' shake their head and wonder how.

Florida Living Walls, Vertical Green in the Urban Core

I just love this building in downtown Orlando covered in vines!

Creeping fig, Florida Living Walls, Orlando

Yes I know it is a common vine, creeping fig, Ficus pumila, one that is not even native species. But despite the fact that this low maintenance, drought tolerant is an exotic landscape plant, I still appreciate its use in covering otherwise, blank concrete block walls.

It is important to always check to make sure a landscape plant is not listed by regulatory agencies as invasive, and creeping fig, Ficus pumila, is not on any invasive lists I am aware of.  The plant is actually a relatively slow grower.

Here the plant is also shown growing on the historical Lady of LaLeche Chapel in St. Augustine.

Creeping Fig, Ficus pumila, living walls, Chaplel LaLeche, St. Augustine

Creeping Fig, Ficus pumila, living walls, Chaplel LaLeche, St. Augustine

Living walls offer so much.  They;

• Reduce urban heat island effect
• Provide habitat for wildlife and insects
• Sequester carbon
• Produce oxygen
• Create a sense of place and add immense beauty
• Integrate in natural pest control
• Serve as insulation
• and provide so many more benefits!

Kudos to creeping fig and those who have planted it at the locations shown above.

Living with a Dissected Aorta, Good and Bad News, Depression and Hope.

I am so confused and can't figure much of this Marfan challenge out.

Some days I could care less about my dissected aorta.  Usually on those days the sun is shining and I go for a bike ride, keeping my physical exertion to a minimum but distracting my mind from the torn vessel from inside my chest.

Other days, like today are rainy and generally blah.

Yes, this is all perspective, I remind myself.  I could have been born in a much poorer place of the world and be dead now because of a lack of access to hospitals.  I could have been born during the Inquisition period too, or any other horrid point in history.  Instead I am here today with hot water, electricity, Facebook and grocery store food.  So I should be thankful instead of gloomy.

But I am gloomy.  And it didn't help that I awoke this morning to an article in my email inbox about the FDA approving Medtronic's thoracic stent graft system for people like me living with a dissected descending aorta.

Ugh.  The article starts out in the first couple sentences stating, "Expand Treatment Options for Patients with Dangerous Tears in Upper Segment of Body's Main Aorta".  Hey, my tear goes all the way to my feet so is that dangerous times three for me? Ugh again.

Then the article talks about my condition as a "serious cardiovascular condition associated with high morbidity and mortality in which the upper segment  of the body's main artery has become torn along the innermost layer of the vessel wall."

Using the words, 'morbidity' and 'mortality' is such an endearing writing strategy for those of us living with dissections.

I am so glad the medical profession is working to find solutions.  Without such I'd be dead now of a ruptured ascending aorta.  And I am not wanting to live like an ostrich with my head stuck underground so I won't see or hear (or read) the 'fear' out there.

Yes too I am so thankful for all the blessings in my life.

But chronic pain is real and so is fear of dying way too early in life from a dissected aorta.

I know I am not alone in this struggle.

Hopefully by writing these brief words, someone else out there suffering in a similar fashion will too know they are not alone.

O.K., now that I have had my pity party I will finish reading the article.  Maybe it ends in a note of hope.

Aptenia cordifolia, tropical green roof plant

Aptenia cordifolia aka ice plant or baby rose plant is a native to the southern Africa geographic region. Aptenia is a beautiful, drought tolerant tropical green roof plant and does well in some Florida environments however the green roof designer should be aware that high humidity loving fungus or below freezing temperatures may very quickly decimate an Aptenia green roof planting. Despite these issues, Aptenia is a lovely non-native horticultural specimen that will turn heads. I would use this drought tolerant plant sparingly on tropical green roofs and only in areas needing significant color splash. When used appropriately she offers significant eye appeal!

 

Posted with Blogsy

Living in the Moment, Family Life and Aortic Dissection

Life is predictably arbitrary.

Dolphin swimming with the current, Mantanzas River

Just when we think we've have mastered our existing set of challenges, other issues capriciously appear out of nowhere, either 'upsetting the apple-cart' or broadening our wisdom, depending on how we want to view these unexpected chapters of our lives.

Yesterday four kids and a dolphin swimmingly through the Mantanzas River's swift currents taught me more about life.

Most days it is all I can do to ponder how I am going to make it through another day with this Marfan Syndrome painted body.  Will my damaged aorta hold out another moon's orbit?    It is so easy for me to become totally absorbed in my own personal health drama.

Don't get me wrong!  Each heartbeat is a gift for me and I know I must be very careful with everything I do from lifting anything over a couple pounds to coping with low pressure weather systems that wreck havoc on my bionic heart parts.

But it is easy to think; me, me, me; my problems.

Compound that with my wife Judy's serious and chronic health issues and I quickly think I am in 'cope ability' overload.

This past month Judy's second eldest daughter suffered a brain hemorrhage, a very serious aneurysm leaving her almost blind.  She is a single mother of two high powered teenagers.  But then again, most all teenagers are 'high powered'.

Judy spent the entire last month sleeping in a hospital room chair, by her daughter's side, every night guiding her through immense periods of pain, helping her daughter navigate the unknown of cerebral bleeding.

I spent the month tending to our two teens, cooking, cleaning, and all the things two parents normally do.

I always say, "my doctor tells me my number one job is to stay alive".  I love this mantra because it allows me to hide inside myself; a place I am familiar with, a place I mostly control and a place where I can placate my self absorbedness.

"It's difficult!" I would proudly and without humility tell those who ask how Judy and I are holding up as we extended ourselves out past our comfort zone.  I loved the attention and I was truly looking forward to her finally coming back to our home once the doctors had stabilized her daughter's bleeding and rehabilitation had begun.

Our two teens are tough enough for two relatively healthy parents to properly raise.  But parenting them all by myself for a short time was taking its toll and I was ready for my wife to come back home from out of town.

Judy's daughter is now recuperating and working with rehabilitation.  Her vision has been seriously impacted, however we are so glad she is alive.  She has a very long road ahead of her with respect to being able to take care of herself again.

Her two teens coming to live with Judy and I, their 'Nana' and 'Papa K', is the best solution until their mom's healing is complete.  Now we have four teens, two teens of our own and two grandchildren teens.

Just the physical logistics of this family integration seemed complicated and overwhelming at first.  But in fact it was a blessing.

Yes the laundry requirements have jumped, as did the amount of food to prepare and the energy output on our part as parents.

But I am learning so much about life from all four teens and also from the dolphin we saw yesterday while out on a picnic down by the beach.

Yes, there are strong currents.  The waters in Mantanzas Inlet are swift.  But if you learn not to fight them, you can go so many new places.  So it is with the many unexpected challenges we face from time to time.

There may be lots more work but there is also lots more laughter, smiles and insights and understanding about our human spirits, like when Dylan ran up to Judy the other day and gave her a really big joyful hug.   Perhaps at the end of the day that is all life is really about.

Yesterday, taking the four teens to Mantanzas National Monument we rode the ferry boat across the river to the fort.  Dolphins swam playfully alongside the craft.  In the middle of the swift flowing potentially treacherous waters, one dolphin rolled up across a wave's crest and loudly pulled in a deep breath.  Our two grandchildren exclaimed loudly pointing, smiling, exclaiming, exuding a sense of wonder and amazement for life in the midst of their deep fear and concern for their mother.

Mantanzas River, Kayaker and Dolphin

Breathing deeply, swimming with the currents, laughing, hugging and living in the moment despite whatever comes our way sure beats that depressing mantra "your number one job is to stay alive".

I think it is time for me to adapt a new mantra.  I am not sure how to word it yet but the thoughts of 'love', 'hope', 'swimming with the currents' and 'living and breathing in the moment' will be what it is based upon.

Maybe my number one job is to breathe deeply, live in the moment and show love and be loved, despite whatever swift currents may drag and pull.  I'll swim with the flow.

Marfan Syndrome Parenting of Teens, My Fears

Being a Marfan parent is hard not only because of the day to day pain of connective tissue problems but also because of the emotional and physical intensity required to mitigate fear of an untimely dissection or other serious health issue in affected children.

Surfer swim-out tribute to Tommy Tant - Marfan Syndrome

I know I am not supposed to worry, but as someone who has a Type A personality I not only worry about my existing dissection, I also worry about what could go wrong in my children's already compromised arterial systems.

My mom underwent aortic valve replacement and has a Dacron ascending aorta.  She had her replacement one month after mine, though unlike mine her procedure was planned.

Over the past two years since both of our surgeries I have talked to her and dad almost every afternoon on the phone.  When I worried about what a loud racket my valve was making, she could relate.  When she fought vertigo, I knew my dizzy spells were not unique to me.  I found much needed inspiration and hope in watching her slow but steady progress with recovery.   She reminds me to check my INR regularly, tells me to avoid grapefruit and checks on new food I mention with respect to blood clotting interactions.

Those days when my St. Jude valve is clicking louder than ever and I worry about it blowing out of my chest, hearing her tell me she is experiencing the same loud aortic noises works better than any medication at calming my fears.

So I want to be the same bastion of security for my children. I don't want them to feel alone in this fight for life against connective tissue health issues.  But learning to be a wise Marfan parent has not been easy for me.

Judy and I do make sure the teens have annual aortic echocardiograms and other health checkups.  The teens are also involved in local community events raising awareness of Marfan Syndrome and aortic dissection and aneurysm issues.  As with any potentially life threatening challenge, awareness has its upside but also can lead to worry in youth.  Finding the right balance with the teens is hard on them and also very hard on us.

There are those who knew of Marfan issues before they had children and decided against raising kids and there are those who made the decision to go ahead and raise children regardless.  I found out about Marfan after Judy and I already had a boy and girl challenged with connective tissue issues.  So now we must make the best of what is and what we are dealt with.  And as most any proud parent would be, I am so very thankful for the our two wonderful teenagers, regardless of Marfan challenges we now face.

But there is a delicate balancing act we must participate in, one with life and death implications.

The awareness activities we encourage our teens to participate in do help them realize the importance of understanding and proper routine medical vigilance.  All this focus on what could happen also sometimes promotes certain fears in both them and in us as parents.

However dealing with fear but having children who are alive is so much better than not knowing about connective tissue issues and loosing a child to a dissection or aneurysm.  My heart cries out for all the parents who have lost children this way.

This past November our teens worked in the Marfan Foundation booth at the Tommy Tant Classic, a national surfing event sponsored to raise awareness of Marfan and aortic dissection.  Tommy Tant died in his sleep at the age of 24 from an aortic aneurysm.  Tommy's mother, Mrs. Tant and his brother Will, and others sponsoring the event have made a huge, positive and important impact on both Ruairi and Jincy, our teens.

The entire event is really a celebration of life and one of the most moving, emotional moments of the event occurs when all the surfers, professional and amateur alike paddle out past the breakers and form a circle in the ocean.

I have been there, done that with the dissection thing and know that even though my descending aorta is still ripped deep down into my kidneys and legs, I am living another day.  However to Ruairi and Jincy the awareness of what could happen has created unnerving uncertainty.

They now come to me periodically, but on a regular enough basis, holding their chest and telling me they hurt.  Yes both are strongly self-contained however try as they may they cannot hide the fear in their eyes.  This always scares me.

"OK", I say.  "Where does it hurt?  Tell me more about how you feel."   I am not a doctor but I am a dissection survivor.  I remember in detail how the tear felt.

Even though I feel I've developed a personal sense of what is cardiovascular related and what is not, I take each complaint of chest pain very, very seriously.  But I do not take them to the emergency room each time these chest pain incidents occur.

Having to make health decisions that the life or death of their children could potentially pivot upon is not easy for a parent.  In fact, it is not something I signed up for.  However it is something now I will without hesitation take on.

I wish on no one the path I went down during my dissection and subsequent heart infection.  I hate the thought that my kids may have to walk the surgery path that my mom and I have both walked.

This Marfan journey has been surreal to say the least and for those of you who have read previous posts here on this blog know of my 'encounters' with this surreal. From guardian angels and near death out of body experience to stunningly vivid, colorful and wildly animated dreams, my life is filled with events I constantly question with respect to levels of reality.

Regardless of just how real some of what I see, hear or perceive is, my world view and my love for the two teens here are inextricably woven together.

Like this morning, when I woke early and wanted to write, first thing I did was clean the grounds out the glass coffee press.  So I carried the carafe out the front door at four A.M. to empty those grounds around the rosemary bushes.  To the left of the herbs there was a little wren holding on to the screen outside Jincy's window, singing a soft,  beautiful song.  I froze. The wren kept singing.  I walked closer and the wren didn't fly away; it kept singing and singing.   The pretty little bird sang for me for until I walked back into the house.  I turned and walked back out to see if the bird was still there.  It was, and singing even louder.

I turned and went back inside.  Shivering from the early morning chill I headed straight for Jin's room.  I know she thinks I am an overly cautious parent because I am always checking on her and her brother while they sleep but I could not see the rise and fall of her chest so I reached and turned on the hall light.  The glare prompted a wince from her sleepy eyes and an "I'm O.K., Dad" half whisper.

I sighed heavily, turned down the light, closed her door and shuffled back into the kitchen to grind dark roast coffee beans.

This morning I fought the fear that the little bird may really have be the spirit of my child singing, leaving her body.  The fear was real, very, very real.  Being a parent is so hard sometimes.

Now, when my son or daughter come to me with a look of concern on their face and hands over their stomach or chest, we do the 'checklist' diagnosis routine.

"Dad, my chest hurts really bad."

I pause, look them in the eyes and ask, "O.K.  Where exactly does it hurt?"

"Here in my chest."  They usually run their fingers up from their stomach to their neck and back down.

First question I come back with is, "Does your jaw hurt?  What about your back?"

"No, it is not my jaw or back," they respond.

"O.K., good", I tell myself.  The thing I remember most about my dissection was jaw and back pain, though caution is appropriate here as these may not be symptoms presented during a dissection or aneurysm.

"Just really hurts deep in my chest," they usually continue.

"What have you eaten today?" We then go talk about the types of foods they've ingested recently.  I key in on any sugary or acidic foods. "Could you have acid reflux?" I may ask.  "What about exercise or sports?"  Sometimes a strenuous activity may be the trigger.  "Could it be a pulled muscle?"

If we cannot quickly pinpoint a food or activity as a potential cause I will take their blood pressure.  Caution is appropriate again here too because unusual blood pressure is not usually an indicator of dissection or aneurysm.  My blood pressure actually dropped during my dissection.  Yet I still like to keep track of their blood pressure and pulse when they start complaining of chest pains.

I'm mostly encouraged when I see systolic and diastolic values of  around 95/60.  Dissection can be, though not always, aggravated by high blood pressure or adrenalin surges.  Knowledge that their aortas are only moderately dilated combined with a low blood pressure reading is somewhat statistically reassuring but still dreadfully disconcerting.

One can never be sure with this connective tissue health problem.

Usually the teen's pain will subside over time.  So far to date, I've not actually taken them to the emergency room for chest pain issues.  And I hope I never have to.  But when all this happens I am participating in a calculated risk with my children's health and lives.

There have been those days where the pain lingered longer than normal.  The teens then expect me to check on them more than once during the night.  And when I do the rise and fall of the sheet tells me they are O.K. for the moment.

The wren outside my daughter's window may really be just a wayward singing bird.  But I still worry and need to make sure Jincy is in her room, sleeping, breathing, and alive.

No matter what happens in our connective tissue torn lives I will be grateful for the friends within the Marfan support community I've found over the past several years.  There are those who have already lost children, spouses, parents, family and friends.  There are those who are presently fighting for their lives and those who have survived the worst.  Groups like The Marfan Foundation offer resources and serve as a much needed safe haven of knowledge from fear of not-knowing how, when or why this serious health issue manifests itself.

But even with all the family, friends and community support, it is still hard to know just what to do when someone who is Marfan challenged, especially when that person is a child comes to you and complains of a hurt in their chest.

I love the mystical beauty of the wren singing on my daughter's window in early morning hours.  I'm sure I'd enjoy the sweet bird call more though if I wasn't so worried about my daughter's Marfan issues.

Personal Marfan challenges are tough enough to deal with.  But I've momentarily beat my dissection.  Being a parent of a Marfan child, though, well that is a whole different song…..

Dissected Aorta, Connected Tissue Disorders and 2014

It has been an entire month since I last published a blog post.

Dissected aorta or not, must keep going!

Pain and depression I've battled lately have discouraged me from writing. However I know that I need to keep pushing my partially functioning brain.  Last thing I want is to end up with moss and fungus growing all over and inside my head.

The memory loss and recall issues is so very frustrating. My conversations are sometimes filled with nonsensical terms as I reach into once word filled but now empty grey matter chasms.

And my body hurts so bad.  Last night I had promised others I'd show up for New Year's eve fun.  However after taking the teens out for pizza I felt the imminent crash of pain and exhaustion and had to have Jincy take me home.  Stumbling into the bedroom I fell on the floor and passed out into unaware oblivion until the midnight neighborhood fireworks rocked the house.

There are no words to truly describe the feeling of muscles shredding, pulling apart, unraveling, burning with uncoolable heat.  Curling into a fetal position I lay still for hours, until I fell asleep once more, the rest a gift of mercy from my guardian angel and from God.

It is so easy to feel sorry for myself.  With a dissected aorta, an obnoxiously loud aortic valve, chronic fatigue, the worry and pressures of living life as a disabled person without a driver's license, watching my wife nurse her second oldest daughter laying in the hospital with a cerebral hemorrhage, two teenage additions to our family (who are truly blessings) experiencing the turmoil of their sick mother and having to be transferred to a different school midyear, the physical demands of keeping up with the parenting and energy input requirements of four teens, and all the other 'stuff' that happens to us all, well....it is easy to become self-absorbed in pity.

I can say I will choose the higher path, one with love, care and concern for others above myself.  That sounds so good.  But I know I am only human and will soon fall back into the narrowly focused pit of pain and hurt, because I really do hurt!

But I am going to try.  I will fight off the ... (I cannot think of the appropriate word for the state of being where depression and pain are so friggin bad - maybe - monumental BLAHS) and commit to trying, at least for a day.

So I will be once more posting diet and blood pressure and Marfan Syndrome - Dissected Aorta life notes here on the blog.

Maybe if I can get through today I will do the same again tomorrow.

Yes, I am thankful too.  I do have a wonderful family, wife and children.  That loud aortic valve means I am alive.  My friends are so encouraging.  My guardian angel sits faithfully outside my window and follows me wherever I go.  There is a marvelous organic garden outside.  Sidewalks bring beautiful and adventurous pathways for miles along most of the roads here.  Wildlife and wildflowers inspire haiku and poetry and life's beauty is inspiring.

But the depression of hurt sucks.  I am not going to lie to myself about this.

Just going to focus on making it through today.

It is going to be a good one.  Despite.  Hallelujah, right?

My Near Death Experience and Angel Acquaintenances, #Marfan Syndrome, Death and Life

I'd been asked a couple times lately about my thoughts on 'angels'.  Since my Florida Drivers License has already been medically revoked I am not in any danger of loosing any more privileges from being assessed mentally unfit.

My sketch of Heidi, our granddaughter who passed away last year

 Maybe someone could try and have me committed however I am betting that process would be significantly more difficult than revoking a drivers license, especially considering I am a pretty smart lawyer too. 

However just the fear of having freedoms taken away is a strange concept for some of us in the United States to even begin to comprehend. 

This post is about seeing angels.  If you don't believe in angels, that is ok.  Over the last two years though I've had a substantial number of encounters with angels.   Some of these spirits were good and some were not good, at least from my perspective.  And I bet most would agree that perspective is reality.

Enough other people have shared similar experiences with me.  If I am crazy then there are others crazy too.  If I am not crazy as I believe and have actually had real encounters with angels then I am confident that there are quite a few others who have interacted with these and other spirits too.

First of all as I've strongly suggested before, words are too inadequate to describe true reality.  Words are a starting point.   But trying to label those self-aware beings I've come to not be surprised at their presence anymore, is difficult to accurately do limited to dictionary nouns and adjectives.

Cherub, archangel, guardian, seraph, sprite, celestial, supernatural, holy and a myriad of other words exist to pick from in describing those others ('I know a  phrase like 'those others' sounds a lot like the television show, LOST but I can not think of a better term tonight).

I first became acquainted with the 'those others' during my first open heart surgery.  As my heart and body were separated during bypass I woke up floating just below the operating room ceiling.  Before I'd only seen the operating room in a highly medicated state as I was being wheeled in on the gurney.

Now though, I could see every detail of me on the table with a team of doctors and nurses working on my body, talking, moving and doing whatever doctors and nurses do during a major surgery.  My heart was clearly visible inside my open chest.  I remember asking myself if I was dreaming.  I was lucid and everything was incredulously clear.

Off in the distance I could see throngs of people I knew and others did not know.  They were all sending me good thoughts and praying fervently.  I did not have any feelings of fear but rather a sensation of curiosity.  I knew my wife Judy was in the waiting room and I knew she was going to be OK no matter what.  There was no sense of panic or helplessness.  In fact I felt very much at peace, relaxed and filled or covered with a bright feeling of love.

Looking up I could see through the ceiling.  Beyond the roof lay another world, one filled with what I can only describe as an immense, thick essence of love.  Everything was real, very real.  There were many beings, all very, very happy to see me, all just as real as the doctors and nurses in the room below.

But then the bumping started.  I tried to move towards 'those others' but for some reason was stuck below the ceiling.  Every time I would literally float up I'd bump into the ceiling and bounce back down into the air above the operating table.  At first I was frustrated at being able to see and hear the others but not being able to join them.

A calm voice informed me I was not going to leave my body permanently yet, that it was not my time to die that night.  'OK' I thought, 'this is really amazing'.  Before the dissection I had always worried about dying and what happened afterwards.  But the actual experience was not one of dread, not one of missing my wife and children, not one of regret of having to leave, but instead was one of excitement and anticipation.  And I had other beings to be there with me through it all.

Bright lights, unbelievable landscapes, colors, senses I've never experienced or imagined before and a warm, all encompassing love clothed and lay before me even as I bounced back down from the operating room ceiling.

I am a scientist trained in formal, demonstrable proof and have always questioned near-death accounts like mine, that is until it happened to me. I also flatly reject any suggestion that experience was imagined and I really don't care if the reader believes it or not.  This is my experience, one no one can take from me.

After my surgeon woke me hours later and as I began a very long recovery path, the out of body event stayed in my memory with startling detail, and continues to do so even today.

Subsequently there had to be a second open heart operation to clear a thick mass of fungal growth around my heart from complications arising out of the first surgery.  Months later I was finally home.

Death then lie in waiting close by.  I cried the first time Judy and I went for a very short walk under a five hundred year old live oak in Bulow Plantation State Park, thinking I'd not live to see my teens grow into adults.  But that night, lying in bed and looking out the window across the swimming pool into the saw palmetto flatwoods I saw the first of 'those others'.

It really looked like Gandalf, only about fifteen feet (five meters) tall and bright white, and it knew I was looking at it.  I feel bad for calling it an it, but I am at lost with available words to use in discussing this topic.  Anyway the Gandalf other knows how much I appreciate being looked after and over for many days and nights, giving me security, guarding me from what what I should be guarded from, bringing me peace, allowing me to close my eyes without fear.  I would tell Judy and a some close friends about these angels or those others.

Some nights two or three would appear on the lanai just outside the bedroom window.  On a rare occasion they would come into the bedroom.  I knew why they were there -  to protect and look after me - even though these never spoke out loud.  These 'those others' wore long silk-like robes.

Those others, those angels who came, walked a long, dark and lonely path of recovery with me, watching over me, there to make sure my wife, Judy, children and I were OK at all times.

They still come to visit after two years though not as often anymore.  I called these angels the 'guardians'.  They were there to protect me and from what I was soon to find out.

As my body strengthened bit by bit each day I began to walk.  Walking helped move the lymph and blood up out of my ankles and back through my organs for cleansing and processing.  The first day on my feet I walked five steps with help.  Each subsequent day I'd add another step or two.  After a couple months I could walk to the mailbox and back.

Today I walk and ride my bike, but with a heart output function of twenty to twenty five percent I tire very quickly.  Yet I believe walking keeps me alive so I walk and walk and walk some more.

One place I like to walk is along the Atlantic Intracoastal Waterway here in Palm Coast.  There is a nice wide paved walkway on the banks of the waterway, several nice parks, restroom facilities and a Children's Memorial Garden where I've hung a set of windchimes for little Heidi, our granddaughter who passed away last year.

Those others followed me faithfully on my walks.  Sometimes they would walk out of the bushes along the path, smile, nod and then disappear.  It never fails that when an angel appears I do a double take.  The being is always there the second time I look, but never stays long.

Some of 'those others' even have a sense of humor.  I've had one drop out of the sky riding a bicycle and land on the paved path next to me, laugh, tell me, and I quote, 'just checking on you' then take off and ride off down the path, laughing even louder as they rode away. 

One day I literally jumped, dropping my crutch-cane when a very dark, greyish spirit came charging out of the bushes towards me.  But almost as instantly, just behind the charging thing I'd call a 'demon', came one of the guardian spirits.  The protector grabbed the greyish demon and threw it violently down into the earth, turned and was gone.  Shaken I picked up my cane and returned to the park area.

Several people walking close by stopped out of curiosity to stare at me when I jumped as the grey spirit charged. 

I believe this grey spirit was something bad, something that wanted to harm me.  However the guardian angel stopped it.

Yes, even after two years they still let me know they are there.  Last week there was one in an animal form, brilliant white, persistent even with the double and triple head turns and eye rubs.

Some are very lovely, with long flowing hair.  Others are the epitome of strength and security.  Some are small, some large.   They all come to me when I am awake.

Yes, I have had what my neurologist calls "embolistic events" or small strokes as a result of the dissection, surgery and recovery.  I drool, stutter and have extensive short term memory loss.  I take beta blockers, clot prevention medications, aspirin, statins and ARBs for blood pressure.  My dreams are quite vivid every night.

But 'those others' come to me in the day, when I am awake and well aware of what is actually happening around me.

There is no doubt in my mind what I experienced the night of my dissection and the intense out of body excursion was real.  I saw other beings, angels for lack of a better descriptive term and my self-awareness existed outside my earthly body.

These others had a job.  They watched over me and still do.  I see them, hear them and know they are around me.

Some may try and take what I saw and continue to see and pass it off as my mind playing seemingly real but actually illusory tricks. I feel like I don't have to defend what I see and hear to anyone.

To me these angels are real.  I believe that once one walks that fine line between life and death daily as I and others do we are privileged to witness part of eternity here and now.

Before my dissection I'd smile and shake my head to hear this.

Reality is primarily perspective.

I know angels are real.  I now know there is so much we here on earth are really clueless about.  They say seeing is believing.

I've seen and I believe.

My Confused, Broken Heart Jerked Around Daily

Poor confused heart.  I feel sorry for it.  But I appreciate it.  However it has occasionally been telling me the 'calvary is not coming', and we may have to deal with the worst.

Yoga for Blood Pressure Control

No wonder.  It's been cut into, had the original aortic root cut out and replaced with mechanical parts.  It has been on bypass of a long time.  It has had multiple surgeries.  It suffered through almost fatal endocarditis.   It had a pic line inserted next to it for almost four months of daily heparin, fluconazole, vancomycin and amoxicillin.  It dealt with a nasty wound vacuum taped above it.  It fights off fear and doubt, sadness and depression daily.  And it is protected by a very precarious unstable sternum with wires almost poking through my chest. (I have to say though I do love the loud surreal mechanical clicking :))

First thing in the morning it is dosed with losartan, metoprolol and aspirin.  The metoprolol works to slow it's beat down to about 40 beats per minute.

Within minutes of the metoprolol it is hit with a jolt of freshly brewed bold and rich coffee out of the French press, something I know is probably not so smart but without the coffee I walk around in a zombie state all day long.

Cardiac confusion sets in as the metoprolol tells it to slow down and the coffee tells it to speed up.

After the second cup of java the coffee wins out over metoprolol and the blood pressure begins to rise.

To offset the rise in blood pressure from the coffee that pulls me out of zombie land I start with prayer,  Yoga and breathing therapy.  Now while the heart is beginning to race my focused breathing and calming focus on omniscient love somehow mitigate the caffeine's effects.

After slowing from the metoprolol dose, then speeding from the coffee and again slowing from the Yoga, my fingers and toes begin to go through their daily chill, as my partially functioning heart can't pump enough blood to the now constricting peripheral arteries.

And as the peripheral arteries constrict, the Yoga slowed heart starts pumping harder and harder to move blood to the fingers and toes.  At this time I know AFIB is moments away.

But as I tire of coffee after the first two cups and turn to ginger and green tea, the heart starts slowing once more.  Ginger tea, socks and a hot shower help with peripheral blood flow and once more the heart relaxes.

The sun now a couple hours in the sky and feeling relaxed, I walk outside, making a decision to either go for a walk or ride my bike.  Once into the walk or ride my heart starts beating harder and harder….sigh.

Worrying about too fast a pulse and potential effect on my dissected aorta I return to the house and lay down by the bedroom window to take a nap, slowing my heart again as I fall asleep, totally exhausted from the little bit of morning's physical activity.

Waking from the nap I open a letter from Division of Motor Vehicles to see that my driver's license has been medically suspended or some other typical 'bash-the-disabled' letter (I have begun to dislike the U.S. Postal Service as they have become a barer of bad news more than once lately).  Coping with huge challenges like these, especially unexpected ones sends the cardiac muscle into overdrive, and one day may be the cause of an aneurysm.

I slip another big blue metoprolol under my tongue and let it dissolve.  If the big blue pill doesn't help I pop a losartan.  Soon my heart shifts from racing mode back into slow mo through by this time my chest is hurting from the constant changes in slow, fast, slow, fast, slow, fast, slow motion.

I know my heart does not do well on the roller coaster-like ride each day.  Dietary changes, as well as constant physical therapy and a focus on spirituality are helping me level the valleys and peaks somewhat.  But I still have a long ways to go.

This journey of getting to know my new heart in a much more intimate way than I ever knew it before is now becoming a passion.

Not only do I want to live a long time but I want to try and heal my flopping, torn, ripped main artery that runs down from the Dacron tube atop my heart down into my chest, kidneys and legs.

I have learned so much, especially lately.  But there is so much more to learn.  And much of what I've discovered has not come from doctors but from others suffering from the same and similar challenges.

So much swirls around inside my stroke damaged brain.  Ideas, observations, theories, notes, comments and thoughts of mine own and of my friends are interwoven with those of volumes of proven medical data and surgical experience.

A tiny light is glowing way down the very long, dark tunnel.  I am excited about this light.

Soon, with diet, spirituality, my medications, more physical therapy, the help of my family, my friends and the ability to manage stress my heart may learn to shrug it all off and settle into a steady rhythm.

I call that hope.  Maybe, just maybe way off in the distance I am thinking I hear a bugle and the rumble of that elusive last-minute calvary charge.

Maybe my heart might soon not be quite so confused anymore.