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.

The Cold Front That Almost Killed Me; Barometric Pressure and Cardiovascular Failure

Today is Friday and I am alive and writing about how I thought I was going to die just forty eight hours ago and at that time I had no clue as to why I felt as though my aorta was about to aneuryze.

But now I know what happened, thanks to several research papers published to the internet and input from others who are challenged with similar conditions.

Watch Out For Low Pressure Systems

I would like to take this opportunity to share my experience with others.  Hopefully someone suffering from these symptoms may find this information useful and the following links educational, for feeling like death is imminent can be an unsettling experience.

This Wednesday, November 13th, I retired to the bedroom early in the evening, feeling especially tired and lay out my sleeping pad by the tall, opened bedroom window.  I sleep on the floor because  of my back and feel so much better for doing so, but sleeping on the floor is another story.

The bedroom window opens out to the large screened lanai over the pool.  The lanai is surrounded by Judy's herb and flower gardens which are in turn enclosed by a thick pine and saw palmetto flatwoods forest area.

When the moon is full the shimmering light dances across the broadleaf palmetto, reflecting nature's silhouettes on the swimming pool's surface.  Cool breezes laden with oxygen from the woods flow into the window and cover me while I sleep, filling my lungs with fresh, invigorating air.

Wednesday's weather forecast called for a low pressure system to move in from the north, rapidly covering the area with the year's first heavy cold air. 

Sometime, around three a.m. I woke, my St. Jude aortic pounding loudly, my pulse racing.  The front was coming through,  bringing with it forty mile an hour winds.  The tall pines swayed more than I'd ever before seen them sway.

My chest tightened as though someone was reaching around me squeezing me tightly.  But the cooler air felt good across my face and I rolled to my side to see if the mechanical valve would quieten.   The valve beat louder and faster and the pain did not subside.

Alarmed, I rolled up to my hands and knees, stood and walked into the bathroom to take a Losartan tablet as well as my beloved beta-blocker, Metoprolol.  Usually an extra dose will calm things down when unexpected heart pain hits.

Sometimes my medication induced vivid and colorful dreams can really jump the blood pressure and pulse, but I could not remember any such dream having taken place that night and my chest was much tighter than normal.  Was this an anxiety attack?  I'd not experienced this level of discomfort since my dissection but the sensation was much different than the aorta tear.

I sat down on the floor and began to do gentle stretching exercises, hoping to release the muscle tension.  No luck.  Turned on the Ipad's relaxing music station, and again no success.  Working with my breathing usually helps but not that night.  So I lay back down, covered up and waited for whatever challenge my body had in store for me.

Sleep eluded me for the next several hours and when daylight finally broke I was glad.  The pain persisted.  My blood pressure soared, especially the systolic.   I just knew the big aorta tear was around the corner.  Times like these are difficult because I can go to the ER like most everyone including the doctor usually suggests but doing so always results in a contrast dye CT scan.  I have been in renal failure already and absolutely hate the contrast dye.

Avoiding the ER is always my first thought because of my kidneys and because the doctors usually can not figure out what is happening anyway.  They give me some pills and send me on my way until the next incident where they run a CT scan, scratch their heads, give me some pills and send me on my way once more.

By early after noon the horrible pain was gone and I felt as good as ever.  The weather front had moved through and sunny, cool blue filled the afternoon skies.

Then it struck me.  I bet it was the weather.  Blame the weather.  It just made sense.  My mom and I talk about our mechanical valves always rattling louder during storms or when a system comes through.  I was almost sure my intense pain was do to the weather.  So I started researching the internet's library of barometric related health conditions.

Turns out I found the culprit, at least so I am convinced.

Looking to the NOAA weather site for barometric pressure tracking in Florida, I found that as the cold front came through the local barometric pressure quickly dropped by almost an inch of mercury over a very short time span.

As a scuba diver (pre-dissection) I was well aware of what differences in ambient pressure can do to the body.  Interestingly, an inch mercury drop in barometric pressure could be compared to climbing several thousand feet or more in altitude in a matter of minutes.

 As air pressure decreases, available oxygen also decreases.  Because my heart's output function is already extremely low due to my dissection, valve damage and surgery stress, it has a hard time supplying my body with the oxygen I need.  When, all of a sudden my body is screaming for more oxygen because the existing air O2 content has just dramatically decreased, my heart freaks out.  And wow, did it ever as the cold front was racing through.

Interestingly, my pulse really was not affected after I had taken the big blue pill at 3 a.m.  Metoprolol controls my pulse like a hen-pecked husband who is stifled by his over bearing wife.  But because my heart could not pump faster, it beat 'harder'.  Peripheral arterial vessels constricted and my systolic pressure shot through the roof.  It was like jamming on the brake and throwing down the accelerator all at the same time, a mega Valsalva maneuver.  Worst of all I had no idea of what was happening.

But now I do. And I want to share it with you, just in case you are ever faced with the same symptoms.

There is so much information on the web also.  For instance, googling terms like 'barometric hear attack', 'weather related health issues', and 'barometric migraine', I came across many interesting sites, including;

• A great blog post by Rashid discussing heart attacks and barometric pressure,
• Reuters Health post on barometric pressure and heart issues,
• Nature's International Journal of Science post on temperature, pressure and heart issues,
• Dr. Oz's comments on the same in the Huffington Post,
• A list of cities in the U.S. with the smallest barometric pressure changes,
•  and another post on barometric health issues by the Mayo Clinic.

As the cold front passed, the barometric pressure rose with the influx of clear, cold air and my heart and chest, felt so much better.  My blood pressure settled to normal.

Frighteningly though, there are plenty of studies and data to show that cardiac fatalities do occur on a frequent basis associated with weather systems arriving and departing.

I truly believe I am lucky to have survived the first real cold front of my post-dissection life.

Unfortunately I am not sure what to next time a fast moving cold front comes through.  I may shut the window, hoping the enclosed house will mitigate the sudden drop in pressure and allow me to acclimate to the pressure drop somehow.

I may hide under the covers and pray, or take a hot shower, or who knows.

If you have suffered similar barometric attacks I'd love to hear how you deal with the frightening symptoms.

Sheeez.  Living with Marfan, connective tissue complications and a dissected aorta is a challenge.

But I am up for it so bring it on.

A Marf Morning Musical; Marfan Syndrome Issues

Here is a short parody about waking up, a blend of ballet and orchestra in the bedroom.  I will call the typical daily event my "Marf Morning Musical".  Enjoy!

Drum rolls start as my Coumadin dose is now due and without the beta-blocker my St. Jude aortic valve is clicking louder and louder, faster and faster.  The St. Jude drum section wakens me from a fitful sleep of wild, medication induced dreams.

The only way to quiet the drum section is to take my meds.  That means getting up.  So I stretch and the stringed up sternum section sends a loud thunderous pop, louder than the St. Jude drums, as my unstable sternum pops open once more, as it does every morning.  Added to the sternum pop is the prolonged and melodious 'owwwch" coming from my lips as the chest cage breaks apart.  It has been two years since the last cut through and still no healing (Thank You connective tissue disorders!).

Of course the pain from the popping sternum sends the St. Jude valve section into wild non-rythmic AFIB or VTACH beating, changing the beat from a slow 4/4 to a rushing drum roll.  Now I know I must quickly reach the medication drawer and slip a big blue pill under my tongue.

I roll over to my hands and knees, up from the floor bed pad I've made because my lower back detests the bed mattress and push up to a standing position, taking the first few steps towards the bathroom and the pills.

Ker-pop, ker-pop, ker-pop echos the sound of me walking across sheets of bubble wrap strewn across the floor.  Of course there is no bubble wrap laying anywhere in our house.  But my knees, ankles and other joints must go through their daily popping, releasing all the body gas built up in the joint sections.

But with the ker-pops and St. Jude valve section in full play, my seemingly beautiful and graceful dance across the floor ends up with a loud crash into the bathroom door as the connective tissue in my ankle gives way and my tall, lanky frame flings furiously forward.

No, that is not blue make up covering my forearms and face, just bruises from the Coumadin regime and the morning smacks from the floor, doors, dresser and walls.

Things begin to slow down with my first cup of dark roast  in the French press and a hot shower.  Then then pick up again as the day progresses.

Such is the Marf Morning Musical.

I know there are lots of you out there who can relate.

It is good to know I am not alone with my music and dance.

Fear of Night

November 28 will mark the two year anniversary of my dissection experience.  I am really glad it happened then and I am somewhat 'fixed', at least  for a while.

But aren't we all here only a 'while'?  So every day I wake and am breathing is a blessing beyond any words I could write.  Each new morning's light is like a coffee break (I'll take espresso) in the long day of uncertainty.

However at the end of the day, as the sun sets, a sometimes subliminal fear sets in, a fear of not waking up.  I think this dread of the dark is a weaving of many thought currents not the least being the memory of my late night dissection and the severe panic and pain accompanying the aorta tear.

So at night I do not welcome that visitor of disquietude.  Yet it predictably comes.

I do not understand many things.  But I know this; it is good to wake up and take a breath.  For every new sunrise I am granted absolution from a darkness once more.

Maybe for me this reprieve is what grace is all about. 

Singing Aorta - Marfan Syndrome and Dissection

My aorta has been singing.  On top of the 'itchies-bugs crawling', the clickity-clicking, vivid dreams, insomnia, chronic fatigue and..., now my aorta is singing.  I call it 'harmonic pulsation'.  When my heart beats, I am thinking my torn false lumen is flapping in the blood flow like a piece of paper held taught between two fingers.  Since the tear extends down into my legs my entire body was humming last night every time my heart beat!  This is so cool to have a stringed quartet inside me! Wow!  I love life! xxx