#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.

Intentional Unintentional Disability Discrimination #Marfan #Aorta #Dissection

Sometimes a gentle reminder is necessary.  The world is full of disadvantaged and 'minority' groups.  Those of us who are disabled often feel, as many other disadvantaged peoples do, that we are all too easily forgotten.

Parked in Not One But Two Handicap Spots! #Discrimination #Disabled

Days can go by filled with and full of positive reinforcement.  Usually most people are so willing to help one with a walker or cane through the door or provide a space at the head of the line.

But just when you take the deep breath of appreciation for those supportive weeks, out of the blue those bad days show up.

The deep breath of feeling a part of 'normal' society is suddenly deflated.  Poof.  Emptied.  Exhaled.  Gone.

Like the good days the bad days seem to come in waves.

This week was one of those times where the notion that I, as a person with physical challenges (chronic dissection and affiliated health issues), was not really a part of the 'real' world.

A pity party perhaps?  Maybe reoccurring PTSD, or subliminal depression? Maybe my self-esteem is too low?  And really, why do I take perceived discrimination so personal?  These are all thoughts that shoot through my mind after a day filled with 'intentional unintentional disability discrimination'.

The phrase 'intentional unintentional disability discrimination'  may sound confusing.  Simply put, it is when someone intentionally, but without overt malice, acts to ignore or avoid the reality of the disabled persons world.

And this week I was reminded that 'intentional unintentional disability discrimination' is all too alive and well in the world.

First and foremost, discrimination is discrimination - intentional or unintentional, blatant or subtle.

There is no excuse for any type of discrimination, at all, ever.  However most of us are willing to give others the benefit of the doubt.

"They really did not mean what they said or did" is the phrase I find myself thinking when confronted with 'intentional unintentional disability discrimination'.

However, persons must accept responsibility for their actions, intentional or unintentional.  When discrimination occurs it occurs, and ignorance is no excuse.

For me the solution lies in sharing peaceful awareness, letting the offending party know I feel I've been discriminated against as a person with limiting physical and mental challenges.

No good can come from aggressive confrontational or angry retorts.

But I've seen great things happen when the 'normal' world acknowledges and accommodates a disabled person's struggles.

So to the person who replied, "My sense is that this is no path for people to trifle with if inexperienced" to my post in a Florida Trail Hiking group inquiring if there were other disabled or physically challenged hikers, I know your comment was unintentional with respect to any discrimination, perceived or otherwise.

Immediately I equated the terms 'trifle' and 'inexperienced' to be discriminatory towards disabled persons though.  Just because one is disabled does not mean they are trifling with the sport of hiking.  Likewise just because someone may be a disabled hiker does not necessarily mean they are an inexperienced hiker either.

Making an instant leap from 'disabled' to 'trifle' or 'disabled' to 'inexperienced' is discriminatory, intentional or not.

I replied and suggested that sometimes persons with disabilities may actually be more aware of safety issues due to daily coping with physical challenges.  The commentor agreed and let the topic pass by saying "maybe disabilities are just matters of individuals limitations to imagine another person's capabilities".  Not too sure what they meant but the reply sounded helpful.

Anyway after thinking on the matter for a day I moved past the thought of 'trifle or inexperienced hiking' as a good description of my focused outdoor physical therapy treks.

But then the Frito Lay truck showed up.

In Florida it is illegal to park not only in handicap spots without a handicap designation but it is also illegal for anyone to park in access isles adjacent the handicap spots.

The disabled license tag on our van helps me tremendously.  The doctors say I should not lift heavy items.  A dissected aorta's tear can worsen under shear stress and carrying groceries to the car can create that stress.  With my Marfan connective tissue challenges debilitating bone and joint subluxation can occur with any step. So I am grateful I can make the trip from checkout to car as short as possible while carrying groceries.

Invariably, I end up doing more than I am supposed to.  It's my nature.  I want to help.  I don't want my wife to do all the lifting either.  I don't heed the advice of my doctor.  So the disabled parking spots keep me in check too.  They help me stay alive.

But when I pulled into the Fort Myers Beach Publix and found the Frito Lay truck parked in not only one disabled spot, but multiple disabled spots, I was puzzled.

Certainly parking in a handicap spot without the handicap designation is illegal under Florida law.  Florida Statutes, Title XXIII, Section 316.1956 states:

"316.1955 Enforcement of parking requirements for persons who have disabilities.—

(1) It is unlawful for any person to stop, stand, or park a vehicle within, or to obstruct, any such specially designated and marked parking space provided in accordance with s. 553.5041, unless the vehicle displays a disabled parking permit issued under s. 316.1958 or s. 320.0848 or a license plate issued under s. 320.084, s. 320.0842, s. 320.0843, or s. 320.0845, and the vehicle is transporting the person to whom the displayed permit is issued."

The use of multiple handicap parking spaces for commercial transactions doubly surprised me because Publix is quite aware of and sensitive to the challenges of the disabled.  In fact I see more persons with physical disabilities employed at Publix than I do most anywhere else in Florida.

Handicap Parking is Meant to Facilitate Access for Disabled Persons, not Commercial Enterprises

Kudos to Publix for recognizing the challenges of disabled persons!

Publix also displays their commitment to handicap accessibility with a large sign next to their front door.

Publix is Keenly Aware of the Importance of Handicap Access and Kudos to Publix for Their Efforts in Disabled Employment!

So I was actually taken aback with the 'intentional unintentional disability discrimination' by both Frito Lay and Publix with respect to Florida law, handicap parking and disabled persons access.

Moreover, these photos were taken after the store had opened.  But the law still applies to handicap parking after hours.  There is no excuse.

Truly I know there is no ill will towards persons with disabilities from either Publix or Frito Lay.  This is just another case of 'intentional unintentional disability discrimination'.

Yet it stings. And it is wrong.

Upon seeing the Frito Lay truck parked in the handicap spots and access isles I felt that same notion of being a second class citizen, one many other 'minorities' feel daily too.

But I only ask that we acknowledge what is real.  Disability discrimination does exist, daily.

And the only way to overcome disability discrimination is through awareness.

So, thank you Publix for all you do to help persons with disabilities.  And thank you Frito Lay too.

This may be an appropriate time to remind all parties that ensuring American with Disabilities Act compliance is an ongoing effort, one we can not afford to forget.

Intentional Unintentional Disability Discrimination is wrong.  We all need to stop ignoring it and work together to make it go away.

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.

Applying for Disability; Notes To Myself

Here are my personal notes on the topic of applying for disability.

Kevin's Dissected Aorta - visible intimal flap

This is not legal advice. The information here is only my recollections of what helped me apply for and receive Social Security Disability Insurance (SSDI) on the first attempt..

First of all let me say there are no 'tricks' or 'loopholes' to obtaining disability benefits.  Social Security has specific written protocol for determining who qualifies.  You either qualify or you do not.

Second, you must truly have a disability that will end in death or keep you out of the work force.

As a builder of custom green roofs I could no longer safely work atop buildings, climbing ladders and lifting super sacks of soil media in 100F degree heat.

As a lawyer by education I realized the first time my mind went totally blank for an extended period when writing a report that I could not honestly act as the best advocate for my clients.

Add to those issues dissected ascending and descending aorta, serious kidney disease as a result of dissected renal arteries, cognitive issues from two open heart surgeries and being on the heart-lung machine for long hours and other issues, pain, fatigue and the many other maladies those of us who have survived aortic dissection experience.

As my doctor said, "your number one priority is to stay alive right now, focus on physical therapy, your diet and new lifestyle reality."

If I had to apply all over again here is the approach I'd take:

Retain A Well Recommended Disability Attorney

• Can save you lots of time and headaches
• or, cause a lot of aggravation if your retain the wrong advocate without strong disability experience

I was intent on filing my own application because I thought I could tell my story better than anyone else and be my best advocate.

Preliminary Research 

• Read the disability guidelines for Social Security Disability Insurance here, most commonly referred to as the SSA's Blue Book.
• Watch the seven part SSA Video series on the Disability Process linked here.
• Read the SSA's Evidentiary Requirements linked here.
• Read through the SSA's cardiovascular protocol linked here.

1. Guide your doctors through their diagnoses of your conditions.

• Learn to speak out about what hurts and how you feel.
• Other than blood work or imaging/testing the only way doctors can document what you are capable of is through their assessment and by what you tell them.
• Before each visit write out a detailed list of what hurts and how you feel.  Make sure to specifically address each area of bodily concern.  Kidney pain is especially of importance to those with dissected renal arteries or descending aorta dissection. Neurological issues matter too!
• Make sure your list is included in their written medical record.  Many times medical records are cut and paste by the doctor or nurse.  Insist your records are customized with your input!
• Ask that a copy of each visit medical record  be mailed to you.  Correct any inconsistencies or omissions.

2.  Collect All of Your Medical Records As Far Back As You Can Get Them!

• Consider all your records to be relevant, even those five or ten years old.
• Older records can help establish and document chronic conditions.
• Arrange your records in three ring binders with tabs chronologically. Neatness and organization is paramount.
• Scan and archive all the documents on DVD or CD, making multiple copies of the finished record disk.

3.  Correlate SSA's Blue Book cardiovascular section's relevancy to your medical records.

• For Dissection cases SSA probably will start with Section 4.10 "Aneurysm of aorta or major branches" - link here.
• Sec. 4.10 states "due to any cause (e.g. atherosclerosis, cystic medial necrosis, Marfan Syndrome, trauma) demonstrated by appropriate medically acceptable imaging with dissection not controlled by prescribed treatment (See H4.006)" qualifies for disability.
• H4.006 states "When does an aneurysm have “dissection not controlled by prescribed treatment,” as required under 4.10? An aneurysm (or bulge in the aorta or one of its major branches) is dissecting when the inner lining of the artery begins to separate from the arterial wall. We consider the dissection not controlled when you have persistence of chest pain due to progression of the dissection, an increase in the size of the aneurysm, or compression of one or more branches of the aorta supplying the heart, kidneys, brain, or other organs. An aneurysm with dissection can cause heart failure, renal (kidney) failure, or neurological complications. If you have an aneurysm that does not meet the requirements of 4.10 and you have one or more of these associated conditions, we will evaluate the condition(s) using the appropriate listing."
• Your application Must meet the standard of Sec 4.10 and H4.006 above.
• Many people assume a stable descending dissection is a 'shoo-in' for disability approval yet this condition does not meet the published standard.
• It is critical you document that your dissection is causing restricted blood flow to one or more of the organs detailed above.  
• In most dissectees this is true yet doctors and/or applicants fail to communicate this to SSA.  Sometimes the information may be in the application but buried so deep the SSA medical reviewer misses it.
• Dont Stop with Sec 4.10 or H4.006!  Read through the entire Blue Book and list any condition qualifying for disability in addition to your dissection!
• There are many 'conditions' listed in the Blue Book.  Don't short yourself by failing to read through these and leaving these qualifying conditions out even though they are applicable to your medical condition.
• Many applicants expect SSA medical reviewers to complete a detailed analysis of your condition to the qualifying conditions in the Blue Book.  Some reviewers are quite thorough.  Depending on work load some may not be quite as thorough or unintentionally fail to see a very important correlation.  Its up to you to be your best advocate.

4. Apply early!

• Submit as complete and thorough an application as you can but apply quickly once it has been medically determined you are disabled.
• The date of your application is usually considered the award date for retroactivity once appeals have been finished and you receive your award letter.  A years worth of application submittal delay can add up to ten or twenty thousand dollars.
• You are better off with a denial on a complete application (of course proceeding with appeals) than you are waiting for months to finish your application.  Apply early.

5. Try not to stress.  The process takes time.

• The SSA application process can be stressful.  Consider it a long term, step by step effort that will be worth the end result.
• Realize Medicare will be delayed in most cases for two years after approval of disability or until you reach SSA retirement age.
• If you feel it is moving too slow, write and call your state and federal elected representatives.  Their job is to represent you.  I have seen excellent results with concerted communications to a congressperson or senator (both state and federal).

6. Finally.....

• Realize that this effort is about communication.  Many applications are denied due to incomplete applications.  Moreover failure to communicate needed medical documentation to SSA leaves SSA in a position of no choice but to deny.
• You must communicate all your qualifying blue book issues to your doctor.
• Your doctor must document these issues in appropriately acceptable medical records.
• You must ensure SSA has these relevant for qualifying medical records and that the qualifying issues are highlighted somehow!
• Never give up.  Its all a journey, one where we get there sooner or later....

Cheers!  Kevin.

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.

Connective Tissue Life Doors and a World Market Pottery Mug

Dissection Life has opened and closed many doors in my life.  One maxim I've found to be unchangeable is 'There Will Always Be Change".

Ritual simplification to celebrate life's changes.  Buy a mug and bowl from World Market.

One particular project I've been working on is simplification.  Indeed, before I was diagnosed with a connective tissue disorder and the big dissection I had accumulated quite a bit in life.  Too much to take care of.  Way too much to take care of.  Of course, I was usually stressed about all the worldly possessions I was carrying around in my 'life backpack'.

When I began the simplification process several years ago a sense of new found freedom immediately swept over me.  This was good.  Stress causes inflammation.  That is bad.  Inflammation can chip away at our aorta until it finally tears.

Last thing I needed was anything chipping away at my genetically pre-disposed to tearing Marfan aorta.

Lifestyle simplification is a disposal of both things and also stress.

Ultimately my goal is to own only one hundred objects.  However even then one hundred objects can be a lot to take care of.

So with each new door of change I encounter on this #DissectionLife journey, there exists an opportunity to simplify even further.  Simplification during change also dulls the emotional pain sometimes associated with big life changes because the act of simplifying affords a level of distraction from the possibly negative change event to the positive results from simplification.

That last sentence was a mouthful and probably could use some simplification itself.

I am really proud of Ruairi's summa cum laude standing upon high school graduation.  He is now off on his own life's journey after Saturday graduation and a successful Sunday drive to the University of North Florida.

He even was awarded a Tommy Tant scholarship as one of his many scholarships.  Tommy Tant Memorial Classic is a surfing event each year in Flagler Beach, Florida to remember Tommy Tant who passed of an aortic aneurysm.

Another door.  The house is not any more quiet, I just know now he is not coming home each afternoon after school or basketball.

For me, embracing each new life change with a celebratory act helps afford validity to the particular change.  So yesterday I went to World Market and bought a new pottery bowl and mug that will become my kitchen utensils for eating.

With no children in the house I am hoping we find the sink less full of dishes.  Now, with my one bowl and one mug, I intend to keep them washed and on the shelf after each use, and out of the sink.

So two of my one hundred personal items are made up of a dark blue World Market pottery bowl and matching mug.  Ruairi has left the house.  One door has closed and another door opened.

Nothing earth shattering but another couple steps towards the Zen I find in simplification. And that is good for my existing medically managed dissection.

One thing #Dissectionlife has taught me though is all those little steps add up.

And anointing each change with a separate act of celebratory simplification makes the journey easier and more interesting.

You can find out more about my Project 100 here.

Aorta Diet for Aorta Health, No Fat But Oh So Hearty

Tonight's Potato and Vegetable Bowl meal is created to promote aorta health and improve gallbladder issues.

Aorta Health Diet - Potato and Veggie Bowl, No Fat

This meal contains no additional oils or fats.  The only fats are those found naturally in the plant ingredients, such as the important omega 3's occurring in the broccoli and other veggies used.

What I like about this meal is it's heartiness.  I need solid, filling food sometimes and this dish fills the order besides being delicious!

Another bonus is that the meal is quick and easy to make.  Total preparation time runs about twenty minutes.  This is important for me as I can not stand for long periods of time.

Start by chopping and steam cooking your vegetable selection

To start I steam chopped vegetables in a stainless skillet using a little water or rice vinegar to the stir-steam from sticking, adding more water as the veggies steam.

Tonights veggies include: sliced and diced portobello mushrooms, chopped sweet onion, chopped garlic, and broccoli florets.  You could also add chopped carrots, peas or corn too.  The portobello's texture is very much meat-like and will fool some people into thinking they are eating steak.

I add lemongrass-based red curry powder and organic tamari along with a teaspoon of ground ginger and turmeric.

Potatoes are cooked in the microwave for ten minutes then whipped with hot water.  Add salt and pepper to taste.

Cooked potatoes whipped with water, salt and pepper (skins included)

Place the warm mashed potatoes in a bowl and surround with the steamed veggie mixture.

Aaaaaah.  Your aorta and your taste buds-stomach will be very happy.

This is a low calorie, high fiber meal.  Always consult your doctor before changing diets.

Aorta healthy diets can be so much fun!

How Strong Is Your Aorta? Even Dissected the Aorta is Tough and Durable. The Plywood Matrix.

For a couple years after those two open heart surgeries night time would bring with it a Pandora's Box full of demons I created in my mind.

Aortic Dissection.  Check out my existing intima flap!  Both sides are patent but the false lumen is a dead end.

Recently I put a lock on that box.  Once in a while, in an evening's moment of self pity I'll still unlatch the box and peek back inside.  And then regret hits me for days.

Laying in bed at night the fear of dying would consume me.

Each new twinge of pain or hurt was a prelude to, as Fred Sanford used to say on his TV program Sanford & Sons, "Oh, this is the big one".

Unlike Sanford & Sons, my fears weren't funny at all.

Getting all my 'loose ends' tied up and affairs in order helped, but whenever I opened that wicked box again demons flew in my face.

The years of fear that my aorta was going to 'pop' paralyzed me, mostly when I lay down to sleep in the evening.  During the day I kept myself so occupied that time never arose where I could concentrate on my ever imagined mortality as I could after quietly sliding under the sheets.

Looking back on the night when I dissected and drove myself to the ER, I was not afraid then - even when the doctor told me what was going on and of my chances.

Laurence Gonzales in his book, Surviving Survival, suggests that the real challenge to our sanity comes not during the traumatic ordeal but afterwards when our demons gather around.

I grew to dread sunset for that was when my demons would gather to discuss my future.

Then one day I met this interesting doctor.  We moved to Fort Myers from Palm Coast so I could avoid the cooler winters.  My Raynauds issues prevented me from participating in many activities when the temperature dropped below 60F.

My new primary care physician came with multiple recommendations from friends.  I liked him instantly.   He listened to my thoughts and discussed my ideas as valid rather than quacking dismissing them.

Blood pressure maintenance was critically important when managing an aortic dissection long term he reiterated.  And he praised me for maintaining a 'low risk' range of 105/60 with  a pulse of 60 beats per minute.

'Doc' as I'll refer to him, told me a blood pressure of 105/60 carried with it almost no risk for causing cardiovascular damage.  He repeated the 'almost no risk' over and over.  This has stuck in my mind.

"But Doc!" I'd exclaim. "My aorta is peeling apart!"  It could blow at any moment.

"Yes it could with a high blood pressure.  I have patients with systolic over 200 and diastolic approaching 150.  In their cases, yes.  The aorta could rupture."  He shook his head. "But your aorta is still strong.  And your blood pressure is perfect for long term management."

"What do you mean my aorta is still strong?" I asked, puzzled.  "I feel like my aorta is much like a thin, over filled balloon ready to burst!"

"That is what I hear from my other dissection patients," he replied.

"Listen, let me use an example.  Your aorta, Kevin, is built like a sheet of plywood.  Think of layer upon layer of wood glued together.  Now like plywood may do if it gets wet, your aorta has had the inner layer separate.  Plywood does this often but still retains much of its original strength for a very long time".

He continued.  "We know you have a connective tissue challenge so your aorta and body parts may have a tendency to separate.  This is aggravated especially when you have high blood pressure.  However when you remove most of the stress from the layered plywood or layered aorta, the remaining layers can hold up for a very long time.  You may well live a normal life span."

I could relate to his analogy.  There are plywood boats I've seen warped and separating but still floating.  Plywood used to cover windows many times stays in place for years.  It is easy to imagine the difficulty of trying to pull a separated layer of plywood apart from the remaining wood panel.

"Hmmm" I muttered.  "So even though I have a seriously dissected aorta, the remaining layers are still quite strong'" I said.

"Yes, very strong.  Now aneurysms do happen and aortas do rupture, but not 'normally' with proper blood pressure control.  Keep your blood pressure down, avoid straining of any type, eat healthy and exercise."

"Wow, Doc."

"You are going to live a long time I suspect.  Anything else we need to talk about?"  Doc shrugged and opened the examining room door to usher me out.  "See you in six months or sooner if you need to come in."

The battery of annual CT scans and echocardiograms I have seem to prove Doc right so far.  My dissection/ aneurysm is stable, not much change so far after four years.

Now I am not an unrealistic dreamer.  I do recognize the seriousness of my condition, after all my aorta is dissected from the ascending Dacron graft down into my kidneys and iliac arteries.

But for some reason the idea of a tough matrix like plywood, even though it is separated, puts my mind at ease, at least to the point of where I don't feel anymore like I have to invite the demons each night to come and discuss my future.

Perhaps it was Doc's almost caviler attitude about not being too concerned with the chances of an immediate aorta rupture.  Perhaps it was because I could relate to just how long warped plywood could last.

Definitely it was a paradigm shift from the thin over filled balloon to a low pressure tough matrix vision of my heart and main blood vessel that convinced me to snap the lock shut on that box of taunting demons.

I believe there is truth in what Doc says.

And because I am convinced that my aorta is a separated but still quite strong I am not going to burst or pop any given moment, I have been able to go to sleep with less worry.  Maybe I will, maybe I won't burst in all reality.  But if believing in the strength of plywood keeps me from opening that wicked box at night, then I will keep on believing.

Blood pressure control is very important.  And with proper blood pressure control my layered blood vessels may really stay put.

Plywood matrix means strength.  And our aortas are quite strong.

Finally, lying in bed the other night I realized that our friends, family and even dissection and aneurysm forums on social media are like a strong matrix too.  We all help hold each other together.  We are the glue and layers of a very strong community.

I like the idea of strength in matrixes, even if there is a misaligned layer here or there.

How strong is my aorta?  Plywood tough!

Aorta Dissection - Once Dissected Always Dissected

Yes, I know.  There are a few documented cases of spontaneous dissection healing.

Surviving Post-Dissection Life

But the maxim still holds true.  Once dissected always dissected.

This is hard for me to accept because I am a 'fixer'.  I always have been a fixer.  My family depends on me being a 'fixer'.

Even if I've never fixed something before I have always had the mindset that I could figure out how to fix it.

I can't fix my dissection.  Even if I could fix my dissection there is no going back to life the way I lived before the great rip.

Once dissected always dissected.  We've passed through a new door.  Our life's path has changed permanently and forever.  We have been irreversibly ripped asunder out of life's assumed normalcy. Post-dissection, we now walk in the unknown.

There is no turning back.

We have survived scares and hours of surgery, often unexpected emergency room intervention.

We've re-lived a thousand times over the fear of 'what is happening again" with each new pain or pulse of hurt ringing in our body.

We've laid quiet in the night, our loudly beating mechanical heart parts not beating loud enough to hide noises the grim reaper makes just outside our window.

We've struggled with loss of memory and with loss of happiness all the while our family wonders what has really happened to us.

And for some we've lost our abilities as providers and as 'fixers'.

But though some of us have passed on, many are still here.  As each tomorrow becomes another today we begin to see that the end may not be so near as we once perceived.

Steve Gee recommended the book 'Surviving Survival' by Laurence Gonzales to me the other day over coffee.  Steve too is a dissection survivor.

Gonzales in his book says of survival, " the true transformation in the journey comes when you see the amazing beauty of the place in which you are trapped.  This is the vision of the vision quest.  You embrace the pain, discard your concerns about death, and then the world opens up to you."

I would add, "there is no going back".

Another dissection survivor, Timo Söderlund often says, "today is a good day."

Most every day is a good day now for me.  But it wasn't always this way post-dissection.

Along my healing path there were many times where hopelessness just seemed to heavy a burden to bear.  And it still does even today sometimes.

Yet Timo Söderlund is right.  Today is a good day.

Somewhere along my healing path the immediate trauma of emergency dissection repair began to subside.  An instinct to 'survive survival' arose from deep within.

Laurence Gonzales further states in his book that survivors of deep trauma often will later say something to the effect of, "I'm really lucky.  I don't regret that this happened to me. What surprises me is something so horrific has been such a positive experience in my life."

This is surviving survival.

And I am now to that point along my healing path where I want to turn the trauma into transformation.

Today is a good day.  Even despite the very difficult challenges.

Gonzales offers twelve strategies to move us through survival, including;

1.  Want It, Need It, Have It. (Do something daily you are passionate about);
2.  Be Here Now;
3.  Be Patient;
4.  Be Tough. (Learn to suffer well (This is hard!));
5.  Get the Small Picture;
6. Put Things In Their Place;
7.  Work, Work, Work;
8.  See One, Do One, Teach One.  
9.  Touch Someone;
10. Be Grateful;
11. Walk the Walk;
12. Life is Deep, Shallow Up. (Learn to laugh at ourselves once in a while).

Dissection life has many maturation levels.  They are all hard.  They all are immediate and all consuming.  Each person has their own time table for the different stages of their post-dissection life journey.

I am mostly over the shock.  Now I am seeking out what the adventure has to offer - the opportunities and the possibilities.

Don't get me wrong.  I don't expect to do something 'great' or 'earth-saving' with my life.  I just want to survive.  As Judy says, "there is honor in being like the flowers.  They bloom and they die.  That is life."

Yet there can be adventure and opportunity in survival too.

I see the opportunity.  The 'See One, Do One, Teach One' calls out to me.

If you want to join some of us who have moved past the initial shock of dissection and are exploring what life can offer dissection survivors then search Facebook for the group "Adventures In Life After Aortic Dissection".  This is a closed, private group.

There are many other good dissection support groups, including one of my favorite, "Aortic Dissection Support Group".  Be sure to also follow Aortic Dissection Awareness Day and the John Ritter Foundation of Aortic Health.  Finally, The Marfan Foundation is another great resource to be plugged in to.

Life does offer many adventures and opportunities, even post-dissection.

They are about surviving survival.

I AM A VEGAN NOW!

I've been running and hiding from the dissection issue.  Fear has driven me away from this blog.

Marinated mushrooms are chewy and filling like meat, but contain zero fat and keep me satisfied for about two minutes.

Over the past two years I've reasoned if I don't talk about living with dissection then I won't be affected by it any more.  I have told myself that if I talk about aortic dissection and aneurysms then I am giving the issue more energy and problems may be more likely to manifest.

However I see more and more people who are joining Facebook support groups with many questions about dissection life.

So I am going to come back with pen in hand and journal my challenges.

Hopefully someone will be helped by the ramblings.

2016 is starting off just a little over 4 years beyond my second open heart surgery.  I am still alive.

My latest challenge seems to be gallbladder issues, caused directly or indirectly by a number of factors possibly including my aortic valve.

During extensive testing last month my GI doctor diagnosed me with red blood cell (RBC) hemolysis due to my St. Jude aortic valve.  The valve is chopping up RBCs.

I've known this since January 2012 and even had transfusions just after my second open heart event.

The damaged RBCs are filtered out by my liver, scavenged by haptoglobin.  In fact, most of my haptoglobin produced by my liver is constantly being used up scavenging RBCs.  That is why my haptoglobin levels are low.

My bilirubin is conversely high.  Seems there is a correlation between too many damaged RBCs and bile production - bilirubin levels.  This imbalance may also affect bile stone production in my gallbladder, hence the presence of my gallstones.

Gallstones hurt.  When I eat fatty foods my gallbladder constricts.  Ouch from the gallstones.  Big time ouch.

So for the past two months, since well before Thanksgiving 2015, I have become a vegan.

Yes, that's right, a vegan.  I swore I never would or could become a vegan.  I am a meat person and always have been a meat person.  But thanks to my aortic valve, I am a vegan now.
Typically it seems, when I meet a vegan the very first thing they say after telling me their name is 'I am a vegan'.  This seemed very silly to me in the past.

However after two months of being a 'non-fat' (including no EVOO or other oils) vegan I am finding the first thing I want to blurt out when talking to someone I haven't seen in a while is, "I AM A VEGAN!"

Believe me, the vegan thing is not intentional.

But I do feel very different after having just eaten non-processed mostly raw foods for the past two months.

I feel much lighter (as in twenty pounds) and full of much more energy.  Really the vegan trip is a little exciting, like discovering something new in life long after I thought I'd seen everything.  In that sense I feel a little like a life loving twenty something year old.

To prevent the excruciating gallbladder pain I am avoiding most all fats.  Natural fats, like avocado I seem to be able to handle OK though I haven't added nuts back into my diet as of yet.  If the label indicates any total fat content above '0' grams I avoid.

There really are so many good foods that are high in protein and good carbs without fat.  I didn't know this when I started the vegan diet but am learning fast.  Blackeye peas for instance do not have fat yet are full of protein and carbs.  Black rice is another food I've come to enjoy.  I can make some really good California rolls.  Dates and figs are like candy to me, an easy replacement for chocolate.

Watch those labels though as some foods you'd think would be free of fat actually have quite a bit of fat.  Nori seaweed for instance.  Some brands contain zero fat while others are full of hidden vegetable oils (like the ones I recently saw at Costco).

How long will the vegan diet last?  Probably until I have my gallbladder removed ( a week long hospital stay with higher risks since I am a Coumadin patient) or until I find the vegan diet heals all my ills.

Check back often for more updates.

And have a most blessed New Year and 2016!  I AM A VEGAN!  Kevin