Nine Principles of my Aorta Dissection Life

September is Aortic Dissection Awareness month.

Here are some of my Dissection Life tenants.  Subject to change each day and don't try these on your own at home, lol.

Kevin's Aortic Dissection Hack List

  Aortic Dissection has opened so many doors for me.  I am grateful for each heartbeat and each second I have to live this great adventure.

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.

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!

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!

Living with an Aortic Dissection & Marfan Syndrome

Living with a dissected aorta, Kevin Songer & granddaughter Cali

I experienced a 'root to foot' aortic dissection on November 30th, 2011.

Though I received a St. Jude's Aortic Valve and Dacron aorta, my descending aorta is still dissected from the graft down to my feet.

Its been just over one year now and I am still alive.  Challenges arise everyday though.

One of my most significant areas of frustration has been the lack of available information concerning  the dissection, my medications, available treatments, steps I can take to improve the condition, 'mysterious pains', 'what-if's' and so much more.

Granted, the National Marfan Foundation (NMF) is a great place to start yet my particular significant issue is the dissection.  NMF provides a good deal of information regarding aortic dissections but does not address many questions I have had over the past thirteen months.

Living in Florida, I've joined the Florida Marfan Support Network on Facebook, and subsequently been blessed with meeting many others encountering similar issues there.

Moreover,I've even began my own Facebook Marfan page!

And I've been wanting to start a weekly Aortic Dissection blog, so getting a jump start on the New Year's resolutions, here goes.  Look for my thoughts of living with a metal valve, Dacron aorta, Marfan and most importantly a dissected descending aorta that could aneuryize any day.

With a wonderful wife, grown children, two teens and grandchildren I want to stay alive as long as possible.

Whether you are experiencing an aortic dissection for the first time or a veteran of the disease, your thoughts and comments are also welcome.