Monday, December 19, 2016

Mr. Marfan Man, Do Not Pass Go, Do Not Collect $200, Go Directly To...

Each day is another opportunity to move across life's board game.  More likely than not I end up drawing the Go Directly To Jail card with each roll of the dice.
Marfan Syndrome slows me down but doesn't stop life from happening. #Dissection life

Of course in my Marfan dictated life the 'Go Directly To Jail' card bespeaks of oft unexpected maladies.

Physically and mentally there are so many challenges slowing our daily struggle towards the Park Place destination.

Constant setbacks are so frustrating, especially when I have adopted a healthy vegan and sometimes pescataria diet.

And I walk daily, do yoga, stretch, practice deep breathing, spirituality and all the 'right' things my body and brain need.

All the while I see young and old others drinking colas, eating fried fast foods and even doing nicotine seemingly unfazed health-wise.

So what did I do to deserve this?

Nothing, of course.

Its just I am challenged by a connective tissue disorder.

And living with a dissected aorta.

The healthy diet and faithful gratefulness and exercise does pay off I believe.

But this Mr. Marfan Man can seem to be making progress when that nasty little card is flipped over.

Go Directly To Jail can translate into a seriously pulled leg or thigh muscle, one where I honestly cannot even walk one step without feeling like I am going to fall to the floor.

Or the card can mean a huge hematoma, one the size of a grapefruit across my upper back, black and blue.  Purple too.  The hematoma disappear over time after the dark bruise slowly runs down my back or sides.

The Jail Card can wake me up in the middle of the night shouting in tempo to my mechanical valve, refusing to let me fall asleep for hours, manifesting itself in bad PTSD episodes.

Probably the most appropriate action the Monopoly board game maker could do would be to rename the 'Go To Jail' card 'Go To The ER'.

'Go Directly To The ER, Do Not Pass GO, Do Not Collect $200' fits the bill perfectly, especially for those strange, indescribable pains shooting through my chest, head, arms,  or legs.  The card drawn may also mean an episode of bad vertigo or the seeming inability to breath.

However after five years of living with dissection and the Marfan diagnosis I've begun to realize that its actually good to expect the 'Go Directly To Jail' card each day.  Its not that the Jail Card is good.  It is however important not to be caught off guard so frequently.

That way I'm not so surprised.  Its a little easier to deal with the frequent physics and mental setbacks.

You see now I know my setbacks are results of nothing wrong I've done, they are just the random design fluke that defines who I am.

I am special and different than most.

Thats bad and good.  Bad because I have to suffer, most of the time with unexpected painful and debilitating physical injuries and limitations.  Good because I am aware of this potential for physical injuries and that I am part of a broader group of people who want to spread awareness of 'connective tissue issue' life.  With knowledge we can overcome.

Being aware I have an advantage over others for long term survival, despite.

I know each day I have to be on my best survival game.

Living a Marfan aware life has rewarded me some decent benefits; such as lower, life extending blood pressure, healthy eating nutritional benefits and the positive impacts of my spirituality and gentle physical exercise, and focused health care.

But those Go Directly To Jail cards still keep popping up.

But now they don't freak me out quite as bad.  Because I expect them.  And I know I probably will make it through this next challenge.

I am grateful to The Marfan Foundation and the support groups across Facebook.  The people behind these efforts deserve kudos.

In the meantime I am quite over being surprised by the Go Directly To Jail, I mean 'Go Directly To The ER' card.  Its in the deck and if I get it I get it and will deal with it.  If I don't know how to deal with the challenge there is someone in the Marfan community who really can help.

Looks like there may just be more 'Get Out Of Jail Free' cards in the stack now.

Happy Holidays!

Saturday, October 15, 2016

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.

Monday, August 15, 2016

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 
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.

Sunday, June 19, 2016

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.

Friday, June 17, 2016

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.

Tuesday, June 14, 2016

Dissection Life, Best To Read The Ingredients Before Drinking

Everything about #Dissection life is a learning process. Several times members here have posted about 'probiotics' being important to an '#Aorta Healthy" lifestyle and I am convinced its true.
Added caffeine in kombucha? #Dissection life
Always read the fine print ingredients #Dissection life

YIKES! I stopped in the grocer today to pick up some fresh ginger root for smoothies and purchased a Kombucha (ginger flavored). I thought I was being healthy.
Arriving home I laid down for my self-imposed every two hour leg elevation and drank the entire bottle, even though vinegar based drinks are kinda hard for me to swallow. After all - the more bitter the more better.  
So within ten minutes PACs and arrhythmias began. Now my heart and aorta hurts. I've been off caffeine for about six months now after reviewing the bottle I discovered this drink had 80 mg caffeine. Probably not much for most, but for a  #Dissection life adventurer, a no-no and enough to send me into PACs.  
OK I should read the label, even the fine print. The label read "Gluten free, Non-Dairy, Vegan". But I should never assume anything...  
The answer just now? Drink lots of water and meditate to calm my racing out of sync heart.  
Still learning all about this #Dissection life.

Sunday, June 12, 2016

Ablutophobia and Aorta Dissection

I've suffered from Ablutophobia ever since my dissection. Ablauta-who? Until this afternoon I didn't even know the appropriate term. I just knew ever since my dissection I've had this big and reluctant fear of taking showers.
From that first hospital shower post-dissection, where I was seemingly locked into a claustrophobic glass enclosure and left to my own panic attack over tubes and wounds getting wet, along with quasi-vertigo and my own weak state of being, I have been hesitant to get in the shower and always relieved, even today, when I can step out.
Since I shave in the shower, my shaving has become more infrequent. I look around, fearful of what could happen.
Now I am a neat-freak too. So I force myself to daily shower. But it freaks me out.
So I was really relieved to read that there is actually a phobia named for people who fear showers and I was relieved to find out PTSD events can be the cause of Ablautaphobia. 
So I am not alone about fearing showers.
Not that it is a big deal. Its just another moment of enlightenment - like when I was DXed with Marfan - that explains much of this ‪#‎Dissection‬life.

Monday, June 6, 2016

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.

Monday, April 11, 2016

Updated my Obituary! Have You Written Yours? #Aortic #Dissection

I updated my obituary this week.  Yes,  it seems mostly what is written here lately has been focused around disease, dying or death.  But I am trying to get all things in order so I can turn to the fun stuff on my bucket list.
Kevin Songer's Obituary
Blah!  Who wants to write their obituary?  And the process was actually quite depressing, especially as I was trying to get started.  But the obituary writing process got easier as I wrote and thought and thought and wrote.

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

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

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

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

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

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

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

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

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

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

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

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

Hope it inspires you to write one too. -


Kevin Shea Songer, (Age)
Kevin Shea Songer, (Age), died (Month and Year, 20xx), in his home in Fort Myers, Florida.
He was cremated. A service was held Friday at Lovers Key State Park in Lee County, Florida.
Kevin was born March 24, 1957, in Atlanta, GA., to Louis and Paula (Morrow) Songer.  He grew up in Hialeah, Florida, attending Meadowlane Elementary and Palm Springs Junior High in Hialeah.
He graduated from Leon High School, in Tallahassee in 1975 and Judy Marie Songer on April 5, 1995, in Crawfordville, Florida.
He held an undergraduate biology degree after attending Florida State University and David Lipscomb College and also a Juris Doctor of law degree from Florida Coastal School of Law.
Kevin experienced an unexpected aortic dissection in November 2011 and spent the rest of his life medically managing his descending dissection and related Marfan Syndrome challenges and participating in daily adventures outdoors despite his debilitating challenges.
He enjoyed art, illustrating Florida's wilderness, nature photography, Florida’s state parks, hiking and cycling with his wife and spending time with his children and grandchildren.
He actively blogged about green roofs and life with Marfan Syndrome.  His blogs are located at and
He leaves behind his wife, Judy Songer of Fort Myers; brother, Scott; sister Leisa of San Antonio. brother Brian of Indiana; children and step-children include; Jincy Songer and Ruairi Songer, Sesha Castagna, Kyndra Griffin, Melissa Cummings, Leslie Ferguson, Laura Griffin, Adam Griffin and numerous grandchildren, and many friends across the world who share a passion for green roofs and also those challenged with connective tissue disorders like Marfan Syndrome.
Kevin was preceded in death by, his sister Janna, a granddaughter, Heidi Ferguson; (and if any others).
XXXX Funeral Home ofFort Myers, Florida was in charge of arrangements.  Remembrances can be made to The Marfan Foundation, 

Tuesday, March 15, 2016

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!

Monday, March 14, 2016

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!

Wednesday, February 24, 2016

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.

Wednesday, February 3, 2016

Marfan Life, It's 1:41 AM and…We Need More Connective Tissue Awareness

My right leg hurts too bad to sleep.
My connective tissue tears easily and since I am on warfarin, many times I will develop internal bleeding
I can't lie still.  1:42 AM now and the blue iPhone light reflects across the room.

I worry that all the tossing and turning will wake my wife.  But I worry about that almost every night.  I am hoping Marfan Awareness month helps with others understanding crazy connective tissue life.

My leg hurts and I cannot find a good way to lie on the bed.  At least it does not hurt as bad as it did two weeks ago.

All I did step down off a curb a little differently.  I didn't fall.  I just stepped forward in a slightly unusual fashion.  All this pain because of one mis-step.

People wonder why I am hurting so bad.  Heres to hoping Marfan Awareness month helps with others understanding crazy connective tissue life.

Two weeks ago the nurses at the ER could tell something was up.  Perhaps my dark purple upper thigh looking like a beet was a clue.

"I tear", the words automatically roll off my tongue now when I go to the ER.  This is the second ER visit within a year for a major internal bleed.

The nurse's forehead wrinkled as he studied my leg.  I wish my wife, Judy wouldn't have that worried look on her face.

"I tear and I am bleeding out internally.  I've got blood all in my stool", I had said,  partially repeating myself and rubbing my swollen leg.

Yes, I hoped the hospital ER would be able to quickly determine the extent of my internal bleeding, tell me I was not going to die and patch me up and send us on our way.  My wife had a nature photography presentation the next day and I was so proud of her marvelous art.  I didn't want a stupid ER visit to ruin the show.

But that was two weeks ago and the walnut sized hematoma in my upper thigh muscles now felt hard as a rock and hurt like heck.  And the iPhone clock told me it was 2:10 AM.

I still can't find a comfortable position to lie in.  And the light blanket keeps pulling off my feet.

Why did I take my socks off earlier?   I know good and well the sheets will be off my feet sometime during the night.  Best to leave socks on when you are a long Marf.

How come sheets and blankets are most always made for short people?  Marfan life requires sheets with adequate long length.  And its tough too to find long enough pajamas.

My connective tissue obsessed mind swirls with unending strange thoughts and it is 2:20 AM.

"Are you already awake?" Judy asks.  I feel guilty for having woken her up with my tossing and turning and trying to arrange the sheet back over my feet.

Perhaps more Marfan Awareness could help those we sleep with understand just how much a hassle nighttime can be for those of us with connective tissue problems.

"I think I will type on the computer", I whispered and gently swung my pained leg out of bed.

Tramadol was supposed to help.  My primary care physician had taken one look at my purple thigh and said, "Ouch".  I can't take opioids because they constipate me in a really, really bad manner.

"No NSAIDs for you with all that bleeding", Doc had said.  "You have a torn muscle or ligament and we aren't going to go poking inside of you to see what it is.   Last thing you need is more prodding around inside of you.  I suppose it will take about twelve weeks to heal.  I'm giving you a script for Tramadol.  No need to come back unless it gets worse."

Oh God, I wish doctors really understood what a life with weak connective tissue is really all about.  Maybe Marfan Awareness month will help with doctors more accurately putting together pieces of the connective tissue life puzzle, I thought.

The Tramadol really helped with the hematoma pain.   Unfortunately my PT INR subsequently shot up to over seven.  Even more alarming was the fact that my stools had turned to bloody liquid.

But that was two weeks ago and now its 2:35 AM and I can hear my wife breathing as she sleeps once more.

Living with someone who has Marfan syndrome is difficult, I know this.  I wish she did not have this hard health care giver journey to endure.  Even so, I am really really glad she is my life partner.

Judy has unselfishly given the best of her life to help me through all kinds of crazy emergency aorta surgeries, heart infections and the emending day to day connective tissue problems I encounter.  And I do the same for her with her non-Marfan health issues.

But I hope this Marfan awareness month can help her and others like her understand even more so the craziness of connective tissue life.

Awareness is crucial.  It is now 2:45 AM and I hurt with that danged leg pain.  But I don't dare take another Tramadol or any other pain killer for that matter.  Where are the pain management experts who understand the relationships of artificial heart valves, anti-coagulants and pain killers?  I need to find one!

Yes, I know now the literature supports Tramadol as being compatible with PT INR management.  Looking back on my bleeding episode though, I probably should have been instructed to monitor my PT INR carefully with the addition of the pain medication.

Perhaps Marfan awareness month will help with more doctors understanding connective tissue life and pain management.

The day of my ER visit last week, Judy was supposed to have had a photography showing of some of her fabulous nature photography art.  She especially has a magnificent eye for wading bird and wildflowers.  We both love Florida nature so very much.  Our daily walks are therapeutic on both a spiritual and physical level.

"I'm going to postpone my presentation", she told me.

"No!" I replied.  Last thing I ever want as a tearing Marf is to be a burden for anyone.  "I'll be out of the ER in time for you to do your presentation!"

"I just can't", she said and shook her head.  "I can't speak to a group of people not knowing if you are going to live or die," Judy continued.

This was the last thing I wanted to hear.  Why can't people understand that Marfan Life is all about not knowing what is going to tear or break next?  Why do I have to be the one to get in the way of everyone else's lives?

I just wish they'd understand.

Then it hit me.

As I was writing this post.

At 3:04 AM, Wednesday morning EST.

This whole February Marfan Awareness month is not just to help others understand crazy connective life issues.

I am sure Marfan Awareness month will help those primary care doctors and pain management specialists and nurses and ER doctors with understanding their connective tissue challenged patients like myself.

Maybe even the sheet and blanket and pajama manufacturing companies might read this post and start offering a line of extra-long products (affordable ones please).

And there are so many others out there Marfan Awareness month could reach and ultimately improve the lives of us Marfs.

But what hit me just a few moments ago was the idea that Marfan Awareness month efforts should not just be directed at the 'others'.

Yes, others need to understand our connective tissue problems.

But I need Marfan Awareness as much as anyone else.  I need to know there are others whose legs and back and arms hurt at 1:41 AM.

I need to know that my feet are not the only feet protruding out from under too short sheets.

I am not the only one in the ER because I tear so easily and yes, my wife and family do worry about me  much more than a photography presentation.

Marfan awareness is not just about making others understand how they impact us.  Marfan Awareness is also about helping us understand how we fit into a non-Marfan world.

Like the short sheets and floody pajamas and PT INR or pain management, connective tissue life integration can be difficult to facilitate.

I need to stay involved with our local chapters and participate more in support group activities.

Marfan awareness is not just about 'the others', its about 'us Marfs" too.

I am so appreciative of all my supporting family and friends and physicians and the Marfan Foundation.  I hope we all can continue to be more aware of how we 'connect' in this crazy connective tissue life experience.

Here's to more connective tissue awareness for us all!

Sunday, January 10, 2016

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!

Monday, January 4, 2016


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