#Aortic Dissection Diet - Healing My Aorta Wall, Quinoa Tuna Burgers

Kevin's Quinoa-Tuna Burgers.

Aortic Dissection focused diet has provided me an opportunity to explore new food combinations.  These quinoa-tuna patties are full of nutrients & protein. (Mustard makes an excellent condiment).

Just like anyone else, an aortic dissection survivor needs protein to stay healthy.

Most of our meals are whole food, slow cooked veggie based dishes.   Albeit a much slower but still active dissection life day can sometimes leave me with a hearty appetite.

So I've been making these Quinoa-Tuna burgers for some time now.  They are fast, easy made from just a few ingredients, healthy and delicious.

Aorta healthy quinoa tuna burgers are easy to make, grill & delicious to eat.  They are good hot or cold!

For starters quinoa is generally considered to be a seed and not a grain and reportedly contains most if not all essential amino acids our bodies require.

Quinoa is a solid protein food and muscle builder.  Fiber is another important digestive benefit we receive from quinoa.

Quinoa is available in white or darker colors.  Here I am using organic red quinoa for my #Aorta healthy quinoa-tuna burgers.

And I love seafood.  Although small fish such as herring are my usual fare, tuna is a once every two week treat.  Fresh tuna is always best but if not available then a quality canned or jar supply of the fish will work.

Pasture raised organic eggs add to the nutrients and protein scorecard.

Between the tuna, quinoa and eggs one average sized Quinoa-Tuna Burger will provide approximately 15 grams of protein.  I can easily eat two, sometimes three.  So there is most of my protein requirement for the day.

Here is how I make these mild seafood patties:

1. Chop/dice one medium size onion & add to mixing bowl.
2. Fine grind one cup of quinoa in coffee grinder and add to mixing bowl.

Quinoa is one of my go to #Aorta healthy foods

3. Open two cans of tuna, drain & add to mixing bowl.
4. Add three organic eggs to the other ingredients and mix until well blended.

We always try & use pasture raised hen eggs to receive the maximum #aortic nutrient benefits from eggs.

5. Place parchment paper on baking sheet.

I drizzle a little organic EVOO over the #Aorta healthy patties

6. Shape burger mix into pattie size burgers (slider size works too) and place on parchment paper.
7. Cook on BBQ grill, med-high (425F) until crispy on both sides.

Delicious Aorta healthy diet variety is easy to mix & grill with these quinoa-tuna burgers.

You can serve these Quinoa-Tuna burgers fresh up or sandwiched in between two slices of a  healthy bread with fresh veggies.

Great way for me to get my fill of 'solid-hearty' food when normally eating my simple vegetable-based diet.

I've definitely seen health benefits from my whole-real, home-cooked diet.  My last HDL/LDL blood work ratio scored in the 'extremely healthy' range.

Enjoy!  Kevin

Aorta Dissection, Marfan Syndrome & Chronic Health Management Through Art Therapy

One of the easiest ways to keep my mind off my existing #aortic dissection and other #Marfan related conditions is through regular participation in art therapy.

Aortic Dissection Health can benefit from Art Therapy.  This piece by Kevin is a mandala featuring thyme and mermaids.

Art therapy can involve any number of creativity modalities, including; music, painting, sculpture, writing, poetry, culinary creativity, wood carving, metal working, dance, yoga, wilderness hiking, and much more. 

One of my favorite forms of art therapy poetry is short verse such as haiku, senryu and hiaga.

Painting is also a personal enjoyment and I especially like to use pigment with wood and a torch.

Aortic dissection healing, especially related PTSD and anxiety issues, can be helped through art therapy.

Digital vector art too is another great form of art therapy for me.  And I'd never pass up a chance to cover surfaces in graffiti!

Aortic dissection health benefits from open air art, like 'legal' graffiti!

Each individual will always have their own preferences and styles of expressing themselves through art.

Aortic dissection art therapy is all about becoming 'lost' in the art process & forgetting stress or pain for a time.

Art therapy has been a very effective management tool for my PTSD and ongoing anxiety and pain post dissection.

I even write quite dark and morbid short verse.  How ever most of my 'ku' is upbeat and nature-centric or senryu, such as:

"sixty beat pulse
St. jude tick tock silent not
mutt stares at my chest".

There are some really good art therapy resources on the internet, including the American Art Therapy Association.

I have to admit that when I started out I couldn't draw a straight line.

But my motto is keep trying!

Pull out your crayons and colored pencils, or brushes and paint and give it a try.  Sure does help me take my mind off Marfan Syndrome and an extremely dissected aorta.

Managing #Aortic #Dissection, Making A Switch From Coffee to Marshmallow Root Tea in Mornings

Coffee has bee shown through studies to be good for one's health in a number of ways.

Aortic Dissection.  Replacing coffee with marshmallow tea for Barrett's Syndrome caused by my medications.

But I quit coffee.

I'm now drinking marshmallow tea in the morning and I love the taste.

Marshmallow tea is easy to make.  Pour simmering water over the root in a quart mason jar and let seep overnight.  Heat up the tea the next morning in your rice steamer.

Marshmallow root has a long history of healing inflamed tissue.

After reading yesterday's post about my Barrett's esophagus (hey I learned how to spell esophagus) I know marshmallow tea is a healthier choice over coffee for me, personally.

So far so good.  Marshmallow tea has a rich bold flavor like java with an 'awakening' aroma.

I'll update as I see how marshmallow tea interacts with a complicated body chemistry of #aorta medications.

#Dissection life is ever changing!

Aortic Dissection Meds, Trouble From Ingesting Them Incorrectly

Seven years of daily aspirin, warfarin, amlodipine, ACE inhibitors and other medications to help manage my aortic dissection have unfortunately given rise to another health challenge.

#Aortic #Dissection meds may have contributed to development of Barretts Esophagus

My new health challenge probably would have been completely unavoidable if I had incorporated a few simple habits into my medication routine.

My endoscopy last week indicated I have severe esophageal erosion, more commonly referred to as Barrett's Esophagus.  Barrett's may lead to esophageal cancer.

Not all cases of Barrett's Esophagus will lead to cancer, however esophageal cancer is one of the most deadly forms of cancer known.

Typically Barrett's Esophagus is caused by acid reflux.  Risk factors may include obesity, smoking, drinking and acid reflux due to hiatal hernia.  I do have a small hiatal hernia but have never experienced acid reflux.

I don't smoke or drink and my BMI is on the low side of normal at 20-21.

Connective tissue disorder issues (#Marfan Syndrome) may have contributed to the small amount of hiatal hernia yet my doctor seemed to think my Barrett's may have been caused by years of aspirin use, and more importantly, the way I took the aspirin and other meds.

Interestingly my small intestines and stomach showed no dysplasia or significant issues.

But my esophagus was inflamed, severely inflamed.  The biopsies showed major changes to the esophageal cells but no cancer yet.

I am now scheduled to have an endoscopy every two years to make sure that if Barrett's does progress into cancer, it will be caught early and hopefully in a treatable stage.

The photo in the top right of the picture above is taken under a special light on the endoscope to highlight the area of Barrett's.

Perhaps the changes to my esophagus could have been prevented if I had followed the procedures here for proper taking of medications.

As I do now but did not do for the first seven years post dissection, I take a couple of sips of water first, before placing medications in my mouth.  Those few sips help lubricate your esophageal lining and facilitate the capsules or tablets movement on their way down to the stomach.

Once I take my meds I immediately drink a full 8 oz. glass of water.

Before my recent Barrett's diagnosis however I'd pop my meds in mouth and take a sip of coffee to swallow them down.  From time to time I'd even notice that they may not have all gone completely down and I'd take another sip.

Importantly the stomach and small intestines can handle most medications.  Our esophagus though is much less resilient.

Interestingly, once the esophageal lining cells have been damaged, intestinal type goblet cells colonize the esophagus.  These changes can be a precursor to adverse health conditions.

Swallowing aspirin over seven years each morning with a sip of java, has eaten away at my throat.  In fact, some days I'd even chew metoprolol and swallow without water hoping to slow down a really fast pulse even quicker.

Barrett's is not always attributed to oral medication administration yet it can really help reduce risk simply by taking a few sips first then a glass of water after swallowing one's meds.

Aspirin may not affect everyone the same way I believe it has me.  But as of now I am off aspirin and taking my medications with plenty of water.  As always discuss any changes to your life with your doctor before attempting them.

Live and learn.  #Dissection Life teaches me something new each day.

Who Is The Best Cardiologist? You Know Who.

You know who is your own best cardiologist.

Who is the Best Cardiologist? (You Know Who)

Now hear me out as to why I believe so.

First of all there aren't many cardiologists in the world who have the number of hours under their belt dealing with dissection and aorta surgery as You Know Who.

This week my local cardiothoracic surgeon who will tend to me one day when (not if) my false lumen  blocks off blood flow to my vital organs, said "in a typical year we see about as many dissection patients as there are fingers on my hand."

As a side note I'm betting I might out live him.  We'll see.

When he first started seeing me as a patient I think he said something like, 'you aren't supposed to be alive'.

This week he asked if I'd type up a support group curriculum.

I've been through a lot of cardiologists.

They are all really, really smart.

They are smart about what they are familiar with.

So when a good friend posted the other day about recommendations for an expert cardiologist who understands connective tissue challenges on top of dissection, she inspired me to write about You Know Who.

'I'd travel anywhere in the U.S,' she suggested.

I know the feeling.

Lets see.  To begin with my cardiologists were those who I thought might shed some light on what just happened to me after I dissected.

Maybe they could tell me how I could heal.  But they did not.

Maybe they could tell me how long I'd live.  But they would not.

Perhaps they'd prescribe the right pills.  But after years of trial and error it was You Know Who who begun to figure out how I respond to various meds.

Perhaps they'd know when to operate again on my descending dissection.  You look pretty stable they'd say.  Let's discuss that next year (fine with me).

Maybe they can help me resolve my PVCs, PACs and occasional bigeminy.  Lets do a two week halter monitoring session that ends up telling us not a whole lot.

Maybe they could do this or that or perhaps I am expecting just too much from my cardiologists.

Its scary to think that maybe they really don't know what the hell to do with someone who is ripped up into the neck and down into kidneys and legs.

Except prescribe Amlodipine, Metoprolol, Losartan, Aspirin, Coumadin and statin pills.  Oh yeah, don't forget the annual dose of abdominal and thoracic CT radiation.

Sorry you have traumatic stress disorder.  Can't do much for that.  See your primary care doctor.

Actually all of my cardiologists have helped me along my dissection life journey but in a way I'd never expect.

No they weren't my go-to Guardian Angels.  They weren't the ones with the dissection life answers I'd been seeking.

But they were my teachers.

My cardiologists have taught me to learn everything I could about aorta health, aneurysms and dissection.

They taught me to look for answers.  Answers found not from them, but to look to You Know Who.

Yes, those who deal with dissections and aneurysms and stents and mechanical valves ten or twelve hours a day are a great resource.  Yes they are dispensable to our survival.  But they never had the answers I was seeking.

Ended up You Know Who had the answers instead.

There are lots of You Know Who's in my world, and most of them share a commonality with me.  They are survivors.

Instead of spending ten or twelve hours a day observing and repairing aortic aneurysms and dissections, the You Know Who's live twenty four seven with the same shit I live with.

You become an expert after years of working ten or twelve hours a day with dissection patients.

You are an expert's expert if you live with a dissection for just a short time.

Really now, I just couldn't find a cardiologist who could give me the answers I could 'buy'.

Lets see.  Except for You Know Who, who could really relate to:

• hearing the emergency room CT tech loudly holler 'Oh My God!' while laying on the sliding platform that keeps whispering 'Breath', 'Hold Your Breath', 'Breath'.
• listening to the surgeon on call tell you about slim chances
• vomiting all over your sewn up chest as you wake from an aorta replacement excursion
• knowing something was bad wrong a week later as fever rose and chest swelled bright red
• having the thoracic nurse practitioner frown but shake her head and send home with antibiotics
• going back a couple days later with puss building in my chest just to have the P.A. slice open the swollen chest with a scalpel but without pain killers just to quickly relieve pressure
• enduring a second open heart to clean out a green fungus covering aorta and more
• having the doctor say 'renal failure' and something about a 25% E.F. heart output.
• hoping the infectious disease doctor knows what he is doing with long term IV antibiotics and antifungals 
• watching PICC lines installed into arm with tube threaded up near heart, more than once
• learning how to thread hypodermic into PICC line with one hand and then watching Vancomycin spray out of the IV bag coating your wife care-giver
• wanting to strangle home health care nurse who plasters so much latex tape over wound vac on chest and then pulls every hair out of chest when changing
• wondering why memory doesn't work like it used to with all the statins and other meds
• listening to your neurologist talk about embolistic events and strokes
• stumbling across the phrase 'pumphead' then reading how the machine saving lives causes strokes
• losing driver's license when someone thinks driving is not smart for a survivor
• navigating life as a pedestrian for years as I appeal drivers license medical revocation
• being cuffed and thrown to the ground, threatened with tazing and guns as I walked to the grocery store simply because I apparently looked like a criminal
• hearing cardiologist after cardiologist say 'sorry, can't support you driving' and the cardiologist's receptionist say 'we really didn't think you were going to make it'....
• and that's just the tip of the iceberg.

So I don't really blame cardiologists for not having answers.

And today I don't look to my cardiologists or my cardiothoracic surgeons for answers.

Today I look to You Know Who for answers.  Yep, me.

I did finally find some doctors in Miami at Cleveland Clinic who helped me regain my drivers license.  And if I need to have a planned aorta surgery I'd have them do it.

But for the day to day life stuff, I just don't have the energy or time to regularly make the drive across the everglades to see them.

And so I've come to realize that the best cardiologists are those in my neighborhood who at first I'd shaken my head about.

Yes, they are the ones who said 'you aren't supposed to be alive'.

Now they listen to me.

Because I've learned from You Know Who.

I've learned as much as I could from the 'school of experience (or hard knocks as some might say) and from others who are You Know Who's too.

Like when I finally figured out that if my heart rate drops into the mid thirties and I start getting cold then cutting back on metoprolol from 200 mg per day to 100 mg per day helps bring pulse back up to the mid 50's.    And after discussing with my cardiologist in detail and explaining to him what I wanted to do by adjusting my beta-blocker dosage, he agrees.

Now I'm in control.  Fast pulse of heart flutters?  Take more beta-blockers.  Pulse dropping too slow? Cut back on beta-blockers.

Same principle with warfarin and statins for other cause and effects.

Of course never try adjusting meds without consulting with your appropriate doctor.

But once I explained what and why and they agreed, I now had a seriously comforting level of control.

Control in a life of not-knowing what is going to happen is important.  Friggin crucial.

After five years plus of first hand experience living dissection life and input from hundreds of other You Know Who's who are living the same life and learning similar dissection hacks (thank you all who live with dissections and share your experiences), I finally am finding answers.

And I don't have to travel far across the state or nation to find a cardiologist who really understands.

Because I am guessing there aren't but a handful of cardiologists who are dissection survivors themselves.

And honestly, it takes a dissection survivor to really know what the questions are, much less the real answers.

I love you cardiologists.  I love you care-givers.  You both are so very special.

But a torn vessel that holds life precious blood safely in a holy channel can only be understood by another dissection survivor.

So my cardiologist today has an office less than a mile from our townhouse.  And he is so fascinated now with connective tissue dissection news that I have overload him with and interested him in that I really feel comfortable with him now.  My aorta-centric passion has been contagious.

He listens today.  And asks questions.

If I suggest something he considers it from a perspective I know what I am talking about - from an educated patient perspective.

He then frames the situation with his medical training.

And I come away satisfied I probably have the answers I was looking for.  I came up with them and my doctor fine tuned them.

The best cardiologist is really not far away.

Actually in my own home.

Yep, the best cardiologist for me is You Know Who.

We always must be our own best advocate.

Educate yourself, tap into the marvelous support available from others who are dissection survivors around the world.

Inquire, learn and share.

Only you really know what needs to be done.

And its time to share.  You have the answers.  Others need them too.

Some Good Days Some Bad Days but they are all Marfan Days

Some days are better than others.  This principle applies to all but may be especially relevant to those of us with chronic illnesses.

#IknowMarfan Become Involved! February is Marfan Awareness Month  www.marfan.org 

Others may see my smile, glossy nature photos on social media, and long walks as a sign that all is good.

But  I know the real truth.  Yes some days are better than others.  But every day is a Marfan day.

Most days I try and portray an upbeat attitude, usually answering a 'how are you?' question with 'everyday is a good day' answer.

And much of the time my positive answers and attitude convince even myself that connective tissue disorder life is not really that bad after all.  Especially on those days that are better than others.

Unfortunately, as I've said before, even the better days are still Marfan days.  This truth applies to all other connective tissue syndromes too; Loeys-Dietz (LDS), Ehlers Danlos (EDS) and so many others.

Even the best connective tissue disorder days are still connective tissue disorder days.

Amazingly a good Marfan day can instantly change and become a day some days are better than.  A wrong step, a bump against the door frame, a twist of the neck in the wrong direction, and even a hard sneeze can turn a 'better than other day' into the start of a painful, hurting week.

#IKnowMarfan Coumadin plays into Marfan days for many.  Here is my arm today - internal bleeding and hematoma 

Unless the torn tendon or ligament bleeds enough for a huge hematoma to form, or an arm or leg subluxes to where crutches are needed just to move, most others never even know how bad those with chronic connective tissue challenges may hurt.

Many of us look really fit, trim and healthy and we often hear the stinging compliment, "you look so good - so how can you be sick?!"

But even on those good days when we glow, smile and laugh the chronic monster of painful potential hovers just over our heads, ready to pounce at the first unexpected chance.

The concept of 'I may look somewhat ok' and 'this may be a better day than others but expect the unexpected' can really wear us down.

A Marfan day is a challenge, even if it may be one of the best of the better than other days.

Marfan can manifest in a number of ways including scoliosis, retinal detachment, muscle and joint disfunction and as in my case, mouth and teeth malformation to where I required braces, multiple hernias and worse - aortic dissection.

Today I live with a dissected descending aorta.  My ascending arch and aortic valve are mechanical and Dacron but my descending aorta is torn and blocked by about 70%.  Unfortunately I was unaware  of my connective tissue challenges until the night I dissected.  Had I known I could have potentially avoided my traumatic emergency surgery and subsequent surgery for graft infection.

Awareness is critically important.  And so we must share.  The Marfan Foundation provides educational and support resources concerning aortic dissection and other connective tissue challenges. To learn more about dissected aortas be sure to read the helpful information shared through the John Ritter Foundation website.

February is Marfan Awareness month.  So be sure to check out the #IknowMarfan hashtag across social media platforms and read more about Marfan Syndrome here.

Finally, many times a Marfan day will include more than just one connective tissue challenge.

For me the Post Traumatic Stress Disorder (PTSD) from two open heart aortic surgeries always looms just below the surface of daily activities.  Many days my upbeat approach to life masks the PTSD, other days something small or seemingly insignificant may trigger a rush of fear, dread and worry .  Some days are better than others but all Marfan days take their toll.

Most people in the world don't go through life aware their aorta is dilating every day, expanding and enlarging to the point where like a ballon, it may burst.  Living with the dread of imminent aorta replacement surgery is really stressful.  Even on the best of days the dread is hard to cope with.  But the aorta surgery worry is real and a part of most Marfan Days just as scoliosis, retinal detachment and other health challenges too manifest themselves most Marfan days.

Yes those of us challenged with Marfan Syndrome and other connective tissue disorders try mostly to 'get on with life' and 'keep on keeping on' or 'hanging in there'.  We try.

And many days that is just what we do and we are good at masking or hiding the hurt.

Then there are those less than better Marfan days where all the challenges just seem piled up way too high for us to deal with.  We want to let out a big sigh but our chest hurts way too much to let the sigh out.

No one understands so it seems.  Some days I feel like we are up the creek without a paddle, all alone, all by ourselves.

Social media support groups really do help but we long for an understanding touch, a personal hug from someone who does more than feel sorry from us.  We need someone who understands; really understands.

This is why becoming involved with The Marfan Foundation with local, but also national and worldwide efforts is so very important.

Each one of has so much to share and teach and receive from others.

We've been through those Marfan days.  We live them each and every day of our lives.

We've 'been there done that'.  Some of us have 'been there done that' for years now.

Whether it be retinal, muscular, cardiovascular or skeletal we all have some words of understanding to offer others.

Read through The Marfan Foundation's Get Involved website.  Become involved.  We have so much to share.  We need each other. Its all about awareness and sharing.

#IKnowMarfan

Aortic Dissection, Connective Tissue Issues; Coping With All the Information

I've usually way too many apps open on my phone and am surprised to see how much faster my iPhone runs when I close them all except for the one presently in use.

Corkscrew Swamp hiking for Aortic Health

"Be here now."

More relevant to me than the app analogy is an image of paper file folders scattered across a desktop, flung open, stacks of typed or handwritten pages lying everywhere.  A jumbled up mess of a lot of information is not only confusing but disheartening too.

"Peace be still."

Life with a dissected aorta and Marfan Syndrome (the connective tissue disorder in part responsible for my torn aorta) and with chronic kidney disease from multiple open heart surgeries is a challenge not only on the physical limitation front but also because of the massive amounts of health information I must process daily.

Will this particular food raise your INR or drop the INR and cause a clot?

What about the bleeding an activity might cause if I get bumped or scraped?

What will I be doing when its time to take my beta-blocker that makes me want to fall asleep?

How long do dissectees usually survive?

Daily the questions fill the desktop of my mind like pages from the scattered, jumbled files or too many open apps.

My solution lately is to imagine taking a break and neatly filing all the paperwork and files back into the file cabinet in my back pocket.  Except for the one file I am using here and now.

Sometimes I switch to the app analogy and close all the open apps in my mind except for the one I need now.

So if I am driving then all the thoughts of medications, things I need to do, people I need to stay in touch with, my yoga and swimming I have not done for the day, my blog which I have not touched in a year - well all those thoughts disappear and my focus is only on the road and those cars around me.

Which is the way it should be.

Peace be still.  My blood pressure falls back to where it should be.

The people I am with take notice that I am more engaged presently.

And when I practice this mode of information management my chronic depression from living with  these challenging physical conditions begins to subside.

Be here now.

Close the files.  Close the apps.

Try telling yourself "Close the files. Close the apps" next time you are overwhelmed with a barrage of  information, thoughts and ideas running rampant.

Pease be still.

And then I can more easily deal with my "new reality" of living with a torn aorta.

When, in fact the "new reality" I've been reminding myself daily of is not really a "new reality".

Sure my aorta was not torn before my dissection but it was going to happen.  I just didn't know it.

Now, today I know I live with a pre-disposition (and a torn aorta) to connective tissue tears and all the cardiovascular and muscular problems associated with Marfan.

Understanding my dissection life is not a new, strange and unknown life for me is important.

I've always lived with the potential for cardiovascular problems, I just did not know it.  But today I understand.

The difference today is I have all the folders and information now about these chronic health problems whereas before I did not.  I am still the same person physically today yet I now know.

And all this new knowledge is what causes much of my anxiety.

I am overwhelmed and depressed until I remember....

Close the files.  Close the apps.

Peace be still.

Be here now.

And its all ok.

My back pocket file cabinet is especially important when I am writing this blog, or laying down to sleep or working on my art or doing yoga or preparing food or doing chores, you see I close out all the other apps, especially those files of mortality or other unpleasantries and focus on the task at hand.  Life is much easier when the winds of a thousand pages are not constantly buffeting my curly thin hair.

So when the dermatologist's office called yesterday morning and told me the mole they removed from my leg biopsied positive for melanoma, all the files flew out of the cabinet back onto the desktop of my life once more.

For a while I did the whole 'search the internet for answers on how to put the files back to the way they were before the phone call thing'.

Then I realized the melanoma had been there before yesterday, probably long before yesterday and the reality was similar to when I learned about my Marfan Dx.  I now had information I hadn't had before.

So I quickly filed the scattered papers and folders and put them back into the filing cabinet and closed out all those extra apps.

Instead of fretting about the 'M' word Dx we went to Corkscrew Swamp and watched the sun go down and the almost full moon rise.

And I enjoyed my evening.

The dermatologist office has a great MOH surgeon and they are scheduling a surgery to remove the affected skin area.  I'll open the 'mole' file as I have to just like I do with the 'dissection' file.

But I will also keep them closed when in not in use.

Scattered pages, even if they are full of important information, are useless when in an out of focused jumble.

So close out your excess files and put them away.

Be here now.

Life is really a privilege and I so enjoy focusing on each breath, each moment and each day.

Peace, be still.

Dissection Life: A Father's Day message to My Children

The last teenager is out of the nest now.

Father' Day, Dissection Life Message to His Kids

They are all gone.

Our job was to raise them to where they could fly on their own.

The last one is now a freshman in the university system.

Sure they have a ways to go, however I truly believe they could make it on their own now.

And since today is Father's Day I'm going to send and open letter to my children.  I am putting into words below the thoughts of a Father's heart and dissected aorta.

The theme of my letter to my children is: Disappointment.

June 19, 2016

Re: Disappointment

Dear Children:

There are no more of you in the house and silence is certainly loud.

Take my thoughts in this letter with you the rest of your life.  What I want to tell you is advice I dearly hope you will remember the rest of your years.

I have always, always told you to follow your heart.  I may have let you know my opinion but ultimately I encouraged you, and still do, to follow your heart when making a decision about your life.

Listen to what others say because different perspectives can help guide you through life challenging decisions.  Then follow your heart.

If I could tell you one thing now that I hope you will never forget it would be the following sentence:

Dad says, "It is ok to disappoint others, however never, never disappoint yourself".

Think about it.

Each of you have special talents and very individualized passions.  Your Mom and I always want the best for you, but sometimes the best does not lie in conformance to some traditional way of thinking, politics or spirituality.

Times are changing.  Don't stick your life away in a pre-labeled folder file.

Each of you will encounter opportunities where you could do great things for the world.

Don't ever let anyone or anything hold you back.  If your heart says, 'Yes', ask it once more to make sure then follow with all skill, love and desire.

If you fall, pick yourself up and try again.

But please, please do not repress you heart's passions because of what someone else thinks, or the fear of 'disappointing' someone.

Not that it matters, but the only time I'd be disappointed in you if you were living your life the way someone else thought you should live it.

So.  Disappointment is the word.

Learn to validate your own character by determining who you are going to kindly (Dad says kindly is best) disappoint.

Try carrying an "I am going to disappoint" list in your wallet.  Anytime you feel that old sense of "he or she doesn't approve of what I want to do or am doing', add the name of the disappointed person to your list.  Write down the reason why and how you feel.

Sleep on this.

Then go ahead and disappoint them by doing what your heart is telling you to do.

This isn't easy for a father to say.  I always think I know best.

But one thing aortic dissection life has taught me is "life is so short'.

Always, always follow your heart and don't look back.

As Billy Joel said, "You can get what you want, or you can just get old."

Kindly disappointing people is part of the journey.  Just make sure it's others who are disappointed, not you.

Love you, Dad.

Aortic Dissection and Gratitude

Its taken a lot of generations of my ancestors to produce me. Last night I was thinking of how much I appreciate all their unspoken-of struggles over the centuries and millennia .
I appreciate how many endured dissections and aneurysms probably just like I did (dissection in our family is genetic - my mom had the same aorta replacement as I), and they adventured on. Since aorta replacement has only been around for the past thirty years of so - many of my ancestors endured and survived without medical repair.
I'm sure many times some of my ancestors wondered what was happening to them, not having community support as we do today. Many got up in the morning, went to work and despite the challenges of a weakened cardiovascular system, did what they could do, despite limited knowledge of their condition and limited medical treatment availability.
The challenges our ancestors faced were enormous. Everyday they had to completely create commerce, food, shelter, protection and family. Many did not have even a small portion of the medical care, shelter, transportation or luxury available to me.
Yet our ancestors all had one thing in common and that was they were "Survivors".
And they adventured on long enough to pass those survivor genes on to us.
Today I am grateful for all their struggles, challenges and perseverance to make sure we too could be survivors.
Today, I am Grateful to them.

Aortic Dissection and Raynauds Phenomena, Creative Problem Solving and Non-Fat Diets for AVR Induced Hemolytic Influenced Gallstones (lol)

First, let me apologize for the absurdly long title to this post.

Second, seems like so many of my aortic support group friends end up in the ER during the winter months.

Non-fat diet update, baked malanga and soy sauce.  Hard to describe.

Cold is not a friend to me so I can understand.  I've always dreaded January and February and the fast moving weather fronts that drastically change barometric pressure and urge my mechanical heart valve to go boom, boom, boom twenty four hours a day.

In fact, I ended up in the ER last year with a horrible case of bigeminy once ((bigeminy is not being married to two Gemini) rather bigeminy is where the heart starts beating out of rhythm - more specifically two beats for each normal one beat) and then another ER trip for a serious bleeding hematoma the second time.

I was exceedingly happy to move to southwest Florida this past summer with the grand anticipation of fewer winter cold weather challenges for my body.  I like warm.  I was raised in hot Miami.

But this afternoon I want to blog about a couple of issues, including Raynauds Syndrome, Creative Challenge Solving, this low fat diet I am on and something else which I have now forgotten what the topic concerned.  Thank you Pumphead Syndrome forgetfulness.

My cardiologist knew what Raynauds was when I told him several years ago about my suspicions and he prescribed Amlodipine (5 mg) daily to help with the symptoms.

If you develop cold hands, fingers or feet when the temperature drops ( below 60 F for me) a certain level then you may ask your M.D. about Raynauds.  In severe cases Raynauds manifests as white or blue extremities with painfully numb physical symptoms.

Like aortic dissections and aneurysms I had no idea what Raynauds was about until the aftermath of my two open heart surgeries.

Raynauds, in my opinion, is responsible for many winter and cold weather season cases of sky high blood pressure and erratic, speedy heart beats.

According to the Cleveland Clinic, Raynauds can be caused by beta-blocker use as well as from cold weather.

When I experience a Raynauds attack, my peripheral blood vessels constrict, causing my heart to pump harder and harder in a futile attempt to circulate blood through my hands and feet.  Raynauds induced periphery vessel constriction raises my blood pressure to scary levels and my valve booming booms even louder than normal booming.

All this invokes a stress response in my body compounding the already intense circulatory irregularities, feeding the Raynauds.

What causes Raynauds?  For me an attack is brought on with exposure to cold air.  I can't walk into a Costco open veggie freezer without fear of my fingers turning blue, heart racing and blood pressure skyrocketing.

Staying warm helps prevent Raynauds for me.  Amlodipine too is supposed to dilate my peripheral vessels and does help somewhat but with a cost.  Amlodipine tends to encourage arrhythmias and heart palpations in my chest as well as water retention.

And so I wonder how many of my aortic dissection survivor friends out there are experiencing Raynauds symptoms without knowing what to call the syndrome.

Practicing biofeedback techniques, avoiding stress, knowing when to pull on gloves, wearing warm socks and the silk long sleeve tee my Mom sent me, or seeking out the sun on cold days helps me avoid the ER.  I'd encourage others to ask their primary care physicians or cardiologists about Raynauds also, especially those whose fingers and feet get really cold during to early months of the new year.  It might assign a name to an issue and hopefully provide some insight into cold weather heart complications.

Enough said about Raynauds and winter month ER visits.  My next bit of rambling involves the low fat diet I am on.

OK, up front I know I am doing a good thing by cutting out all processed foods.  I will be so much healthier for doing so.

But eliminating processed foods from my diet is so depressing!

Yes I feel better physically and have quiet a bit more energy now.  Yes, I have lost over twenty pounds since before thanksgiving and my last really bad gallbladder episode.  Yes, I am avoiding gallbladder surgery for the immediate future.

But all the comfort foods I used to run to are now off limits.  No more salt and cracked pepper kettle cooked chips when I am feeling down in the dumps about health issues or any other issues.   No more deliciously distracting Publix sub sandwiches or crispy breaded chicken tenders to banish the blues.

Now I turn to sliced apples or peel a tangerine.

O.K. I know this is a good move.  But I am having a really hard time with giving up processed foods!  I want a non-nitrite organic hotdog.  I want a slab of brie cheese on a crunchy cracker!  I want something salty and oily and crunchy and satiating!  I don't want a raw carrot.

But I am eating mostly veggies and non-fat foods.

As I mentioned in my last blog, I now introduce myself with "Hi, I am Kevin and I am a vegan".

But today I almost had a breakdown in Publix and complained to Judy afterwards that I was so disappointed in life.  I think I may have hurt her feelings and should have been more specific about my otherwise global complaint.

Walking into Publix to buy a package of chicken thighs for her and Ruairi's Sunday dinner, I realized that in my present state of dysfunctional gallbladder health I could not eat ninety nine percent of the beautiful packaged processed food items lining the grocery store shelves.  Probably never again either.

This is a first world problem I told her.  I know I am so much better off sticking with non-processed foods and long term I will be happy with my hopefully soon to be six pack abs (there better be a pay off for the non-fat diet).  I know I should be happy and grateful with the abundance here of fresh veggies and more fresh veggies.

But those colorful bags and bottles and cans and packages of machine compiled food substances with all the long scientifically named additive and flavor compounds were all calling my name.  Actually they were screaming. "Kevin, why aren't you buying us anymore!"  The screaming peaked when I walked by the hummus cooler.

After much thought and a little discussion this afternoon I realize I am addicted to processed foods.  I've been treating those salty, oily, crispy, yummy processed foods as self medication to  mask the symptoms of PTSD from two open heart surgeries, depression, physical pain and chronic fatigue.  When I felt bad I'd head for a brie or hand full of macadamia nut pick me ups.

No I won't ever eat them again.  I may dream about a juicy Hebrew National dog but none shall pass my lips.  I know too well the pain gallbladders can cause.  And since my artificial valve chops up my red blood cells causing a chain reaction with my liver and more gallstones, I will always be stuck with the problem.

Until I have my gallbladder removed.

But therein lies the real problem.  My surgeon says I will be in the hospital for a week minimum because I am on warfarin and then there is the chance of a nicked liver and bleeding and ICU and you get the picture.

Perhaps sticking with a non-fat, non-gallbladder contracting causation diet is best.

This morning in church Rev. Allison spoke about creative problem solving, how we can create the patchwork quilt of our lives in any pattern we choose given the circumstances we are dealt with.

I do fully understand I can take the dissected aorta I am living with and the stoned gallbladder I am stuck with and either make the best of it all or just "roll" over.

Darn it, rolls, especially buttered rolls would be so good right now.  Better yet if I stuck a Hebrew National dog in one and made pigs in a blanket.

Dissection life is a trip!

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

Is My Aorta Still Dilating? #Marfan #Aorta Dissection

How many times during the day do I ask myself this very question?

Flagler Hospital's GE Lightspeed CT Scan Unit

Everytime I reach to hold an object or lift something, my mind shifts to the wondering and questioning mode. Whenever I strain, holding by breath, even for a second I wonder if the now very thin walled vessel will hold or pop. Looking at my teens and my wife the same question flashes through my mind. What is in store for my aorta?

Even watching the few television episodes I waste my time on, the rupture of an aorta is always lurking somewhere in the background. Such was the case when we were watching the season finale of Revenge and the character Dechlan died of an aorta rupture. Another character, Nolan (explaining through tears to Dechlan's brother Jack) referred to the event as a rupture of the 'aorta artery', leading me to believe the script writers had to include the term 'artery' because most viewers would have never asked if their aorta was dilating or unhealthy, and for that matter even know the aorta was an artery, let alone the largest artery in our body.

So every so often my cardiologist also begins to wonder what is happening in my thoracic cavity (chest) and orders a CT Scan event, complete with iodine for better contrast.

I really like Flagler Hospital in St. Augustine. The stormwater pond is a marvelous example of as to how truly green infrastructure should be designed. Birds from around the world come to Flagler Hospital, not of course for the medical expertise but because the big stormwater pond has plenty of shallow water roosts where the two wings can perch, poop and wait for a fish to swim by. I see roseate spoonbills, all types of herons, the goofy anhingas, ducks galore and more. Moreover, the hospital boasts some of the loveliest living walls around, flowering vines releasing their lovely fragrance that unfortunately has to mix with the exhaust of the laundry vents.

Flagler's staff are always so welcoming and friendly (and cute too!). Most are experts at cracking the lamest jokes in an attempt to turn my dour smirk into a smile.

Last time the inside of my elbows looked like a chickenpox battlefield after the nurse couldn't find the vein. Finally they had to get someone else to try. This time the nurse got the IV attached effortlessly and without any pain, making me very happy and keeping my blood pressure at reasonable levels.
Being a Marf is always a challenge for many reasons. The first reason is always having to explain just what a 'Marf' is, the whole connective tissue disorder and aortic dissection thing. I always know at what point in the story their eyes widen to the size of a raccoon's and the words, 'wow, you are so lucky to be alive!' are uttered.

After determining my kidneys are borderline strong enough to handle the contrast dye they tell me about what the IV's iodine rush will like. One never forgets the warm flush as the iodine flows from the arm into the heart down the aorta into the abdomen area, very similar to the wonderful feeling of finally finding a toilet a couple hours after eating a big plate of chopped, steamed okra. I always manage to hold it in, but notice the retractable bed is covered in plastic causing me pause to think of others not so disciplined.

The 'nitro' pill is like afib in a bottle. Because my pulse usually stays around the low 40s, the CT techs always administer nitroglycerin either before or during the test. This time they used a spray, telling me to lift my tongue before they coated the inside of my mouth with a fine mist that makes your heart stand up, salute and sing the Star Spangled Banner.

GE should use a larger font for the 'Do Not Stare at the Laser' warning sign placed adjacent the unit's laser opening. I found myself staring over and over again at the opening and sign trying to read the text. Then there are those ugly little green and yellow heads with noses as long as Pinocchio's that light up when you are supposed to breath or exhale. It is so much easier to interpret to color of the evil grinning heads than understand what the CT techs are saying over the very crackly and way too loudspeaker.

All the stretching and yoga poses I've practiced paid off nicely, for when the CT Techs placed my arms straight out above my head so I'd fit through the CT unit's orifice, the techs did not have to tie down my wrists and the IV stayed in place. The entire test took about twenty or so minutes and, except for the hospital gown flapping about, went smoothly.

The CT Techs and nurses were speechless when I asked, after the test was complete, if I could take a photo of the CT Unit with my Ipad for the Marfan Blog.

Another CT Scan completed I walked down the hall of the lovely hospital, admiring the beauty of the courtyard's waterfall and stunning planted gardens, finding a place to sit and make sure I was not to dizzy to walk out.

My cardiologist will read the scans and compare to the last set of test results and I've an appointment to discuss the findings with him next week.

In the meanwhile, I'll still be asking myself the question, 'I wonder if my aorta is still dilating'. Such is the life of someone who deals with a connective tissue disorder such as Marfan Syndrome.

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