Monday, May 13, 2013

Cardiovascular Health from Food? Beat Aortic Dissection with Delicious Watermelon

I love to eat good food.  And when you can eat all you want (well almost) and get healthier at the same time, you have found reason to celebrate.

Healthy diet is one area of focus since Marfan Syndrom and aortic dissection came into my life, especially when my cardiovascular system and my dissected aorta is supported.

Food for Healthy Cardiovascular Systems - Watermelon is one of the best!
Florida State University (FSU) researchers say watermelon is one of the best foods for lowering blood pressure, calling the juicy melon a 'functional food'.  Functional foods are those, according to FSU as "... foods scientifically shown to have health-promoting or disease-preventing properties, above and beyond the other intrinsically healthy nutrients they also supply."

In studies conducted by FSU Assistant Professor Arturo Figueroa and Professor Bahram H. Arjmandi, results indicated that a diet including watermelon provided natural defenses against hypertension.  According to the FSU professors, watermelon is "the richest edible natural source of L-citrulline, which is closely related to L-arginine, the amino acid required for the formation of nitric oxide essential to the regulation of vascular tone and healthy blood pressure".

Importantly, the highest concentration of the L-citrulline is in the rind.  This means eating into the green.  I found the rind taste to be excellent, not bitter and I was excited about the possibility of finding a natural support system for my blood pressure issues.

Heart healthy watermelon's L-citrulline is found in the melon's rind.
 As someone who suffers from Marfan Syndrome and a dissected aorta, I need to keep my blood pressure low.

Current medications include the beta-blocker Metoprolol and Losartan among others.  Without meds my blood pressure runs high 140s over 90s.  With meds my BP is 120s over 60s.  With meds and watermelon my BP has steadily hovered around 105-110 over 55.

I love to eat watermelon because it is delicious, especially on a hot Florida afternoon.  But in addition to the L-citrulline, watermelon, according to FSU, in addition to the vascular benefits of citrulline, watermelon provides "abundant vitamin A, B6, C, fiber, potassium and lycopene, a powerful antioxidant. Watermelon may even help to reduce serum glucose levels, according to Arjmandi".

For me, watermelon helps cure to 'go grab something sugary sweet' urge, thereby supporting good kidney function.  The less sugar I consume (I am trying to eliminate all forms of refined sugars from my diet, along with most processed foods) the happier my cardiovascular system and organs, such as liver and kidneys are.

I've even grown watermelons on some of the green roofs we have built!  Of course, Judy is growing watermelon in her backyard Florida permaculture garden.

Of course, with any change in lifestyle you should check first with your doctor.  Yet I am very happy with the positive impact watermelon in my diet has made on my life.

Information concerning the FSU watermelon study can be accessed here.

Sunday, May 12, 2013

Marfan Syndome, Aortic Aneurysm and Every Parent's Worst Nightmare

Every so often Ruairi, our soon to be 16 year old teen son will walk up to me and say, 'Dad, my chest hurts'.

#Marfan Syndrome, Our son, Ruairi's aorta is already beginning to dilate
Those words are every parent's nightmare and though I take beta-blockers to keep adrenalin surges from hitting my heart muscles quickly, the unexpected fright response kicks in.

As a loving mother, Judy my wife has the same reaction.  Sometimes our as our eyes meet, though our facial expressions calm as ever, we share deep, silent anxiety.

Of course we pay close attention to what our teens, Jincy and Ruairi say about any pain.  Aortic aneurysms and Marfan Syndrome issues have taken too many young children who were in or just approaching the prime of their life.

Out of God's grace and the superb medical attention I received in the Emergency Room at Jacksonville's Memorial Hospital the November night of 2011, I survived a complete root to foot, Type A aortic dissection.  I now have a St. Jude mechanical aortic valve and a Dacron graft for an ascending aorta.

One month later my mother has the same surgery and she too has the mechanical valve and Dacron aorta.

Genetics play a controlling role in Marfan Syndrome, connective tissue disorders and aortic dissections.  Unfortunately many people, including medical professionals do not recognize the symptoms or traits of this potentially deadly connective tissue disorder.  However, outreach efforts focused on education the public and medical professionals alike are beginning to appear around the globe today in response to too many untimely connective tissue related deaths.

Living in Flagler County, Florida provides our family with the opportunity to enjoy some of the worlds beaches, renown for surfing, fishing and coquina shell sand and surf.  Marfan Syndrome and aortic aneurysms are not however limited to older people living here in retirement.  Children and youth too are impacted by this devastating condition.  Sadly, several years ago a young twenty four year old local surfer, Tommy Tant passed away in his sleep from an aortic aneurysm in the prime of his life.  Today the Flagler Beach Community celebrates the life of the young surfer with the annual Tommy Tant Surfng Classic event to raise awareness of just how aortic aneurysms and Marfan Syndrome can affect youth.

Additionally, the National Marfan Foundation is a resource for individuals and families faced with the challenges of connective tissue disorders.

Yet young people are still unexpectedly dying, leaving this world at way too young an age.

Today more and more medical institutions are participating in research and providing health care for those afflicted with connective tissue disorders.  Stanford Hospital and Clinic, Boston's Children Hospital, and Cleveland Clinic are just a few of the hospitals with Marfan and connective tissue related disorders specialty units.

Yet just because these medical units are available today, the anxiety of being a parent to children diagnosed with cardiovascular issues doesn't diminish.  Those words, 'my chest hurts', are truly one of every parent's greatest concerns.

I personally know what a severe aortic dissection feels like.  I vividly remember the searing pain and can to this day recall how what it felt like.  Sometimes my experience lulls me into a false sense of security with the teens as I question them when they tell me something hurts.  I think I would recognize a really serious event.  That approach is wrong.  A really serious event would require immediate medical intervention.  And so I always take seriously what the teens are saying about their 'pains'.

Regular medical checkups that include CT scans, echo-cardiograms and other tests to make sure the teen's condition is not worsening are some of the proactive actions we as parents can do.  Of course we all have adopted lifestyle modifications including medications, diet, proper physical activity and blood pressure monitoring.

There are support groups too.  Facebook offers several Marfan Syndrome support groups where one can connect with others facing similar crises.  The support groups are so very valuable a place with respect to learning about available therapies, medications and of course how others deal with connective tissue disorders.  Worldwide, the Marfan community shares knowledge, tragedies, encouragement and success stories.

But heartbreak comes from these support groups too as members pass away unexpectedly, as happened again this week.  Always death is always sad, yet sometimes the lethal aneurysm or myocardial infarction comes at way too young of an age.

If the aneurystic event is severe enough there is not really any time to respond.  I was lucky.  My aneurysm dissected only through the first layer of my aorta's wall, giving me enough time to drive myself to the hospital ER.

Life is full of challenges.  There is plenty of pain and suffering throughout the world, much of it unnecessary.

Understanding the importance of cardiovascular health issues is vitally important, especially to parents of children with connective tissue challenges.

Knowledge is probably one of the most important life saving tools for families coping with Marfan Syndrome.

Those teen words will come.  It is not a matter of if but when.  Develop a relationship with a primary care physician, pediatric cardiologist and hospital that understands connective tissue challenges.  Those words, 'my chest hurts', are truly one of every parent's greatest concerns.  Know what to do when you hear those words.

Life is such a challenge.

Saturday, May 11, 2013

Marfan Syndrome? Aortic Dissection? Say What?

The below photo was taken six months before my aortic dissection.  I'm standing on a wonderful Green Roof at Breaking Ground Contracting in Jacksonville, Florida.
Aortic Dissection occurred six months after this photo by Ryan Ketterman of Ketterman Photography

I never had a clue as to what Marfan Syndrome was or that my connective tissue was slowly unraveling.

All the signs were there yet how was I supposed to know about these critical medical issues?  I had periodic medical checkups like most, but never once did any of my primary care physicians ever suggest I should be tested for a connective tissue disorder.  No one told me that all my episodes with strained or pulled muscles, multiple hernias, buck teeth before braces, and a tall lanky physique were indicators of Marfan Syndrome.

Even when my surgeon finished repairing one of my stomach hernias and told me "you have no muscle structure - eat more meat!" did he mention the possibility of a connective tissue disorder.  I have so much mesh in my body I could be a mighty good air filter.

My BMI was in the normal range.  I worked out.  We used EVOO in cooking and I had a high fiber diet.

Sure there were stresses, but everyone experiences the challenges of living in today's society, supporting a family.

But I though my blood pressure of 135 / 80 was ok.  Big time wrong.

Today I keep my blood pressure around 105 / 55 through diet and medications like Metoprolol and Losartan.  That is because though my ascending aorta is now a Dacron tube, up and over the arch the descending portion of my body's largest blood vessel is still dissected.  The inner layer, the intima layer has pulled apart from the middle and outer aortic layer.  My aorta is now like a very, very thin walled balloon.

Want to learn more about living life with Marfan Syndrome?  Follow the blog here for all the inside scoop, the ups and the downs of live with a dissected aorta and a connective tissue disorder.

Want more information on Marfan Syndrome?  Check out all the resources on the National Marfan Foundation website.


Friday, May 10, 2013

Marfan Syndrome Issues - Descending Dissection Issues

One of the reasons I started blogging about Aortic Dissections and Marfan Sydrome was to share what I've learned and experienced.  Today I wanted to mention about how my right foot is growing while my left foot is staying the same size it always has been.

Marfan Syndrome, Aortic Dissection extends all the way down my descending aorta into my right foot

There have been many times I never knew what was happening to me after the dissection and through out the healing phase.  Even today, I've barely the energy to get through the day, though I make myself by taking baby steps, literally, with each task I am confronted with.  With all my medications, my metabolism and heart rate are so slow most mornings it seems almost overwhelming to even get dressed for the day, much less figure out what new daily challenge was occurring with my body.

Not having answers was so frustrating at first.  Yet over time I came across resources and self-help groups.  So this blog hopefully can serve to help others facing an aortic dissection aftermath or living with Marfan Syndrome, either themselves or someone close, such as a child or loved one.  Both of our teens already have aortas showing signs of dilation.  So come back to the blog often and I'll try and  begin posting frequently about the many issues this connective tissue disorder presents.

But getting back to today's topic, I have come to learn I cannot be surprised too much at what happens to the body when dealing with Marfan Syndrome.  When my aorta dissected, the injury extended down through my abdomen into my renal arteries and down into my right iliac artery all the way to my foot.  Over half of the inside arterial diameter, or lumen diameter, is made up of a dead end false channel. 

Theoretically, the blood flow down through my right leg into my foot should be accordingly decreased due to the reduced available flow space in the artery.   One would expect that with reduced blood flow the muscle tissue and foot size would shrink.  Interestingly, ankle blood pressure readings show that both right and left legs have approximately the same systolic and diastolic pressures.  However my right foot is growing in length.

Of course this doesn't make any sense.  But lots of things about Marfan Syndrome do not make sense.  Yet now I have to wear a size twelve sandal to accommodate my right foot while my left foot remains it's original size ten.

The only answer I can conceivably come up with is the right foot's connective tissue is breaking down causing my foot to elongate.  I have noticed a 'sprained' feeling in my foot and ankle area, one I've felt from time to time though all my life, and I have started wearing an ankle support recently.

So for now living with the mysteries of Marfan Syndrome continue.  I am glad to have the foot because walking helps keep my heart and cardiovascular system function from falling to too much of an insufficient level.

I will update what I find out about this curious result of my aortic dissection and Marfan Syndrome as I come across additional elongated foot information.

Thursday, April 25, 2013

Aorta Dissectes Unexpectedly, My Near Death Experience

Unexpectedly on November 29, 2011 my aorta dissected all the way from the valve in my heart up over the arch, down through my abdomen into my renal arteries, following my right iliac artery through my pelvic area into my leg and ending in my foot.  One great big ripping tear.

Home alone that evening with no one to turn to except for our dog, Lily, I had no idea what was happening as the initial acute momentous pain began to change into a deep chronic hurt after about ten minutes.  Walking into the master bedroom I sat down on the edge of the bed, slowly lowering myself back across the top quilt, hoping I was imagining the whole episode, not accepting the fact that control of my body was no longer mine, nor recognizing I had finally hurtled into a really big brick wall.

There was little doubt in my mind something bad was happening inside my chest.  My back felt as though it was being plummeted with a heavy wooden baseball bat, the bottom of my left jaw badly ached, I was dizzy and experiencing an intense headache.

For a brief moment I smiled, exhaling out an ever so slight chuckle, watching the slow spinning ceiling fan seemingly pull me into what I was imaging to be a long, dark vortex.   Day-dream like hypnotic trances are sometimes difficult to shake.  Traveling down into the swirl almost seemed like a relief, an opportunity to explore something different.  But my will to live has always been strong.  I set up and holding onto the edge of the bed and then the walls, moved out of the bedroom, down the hall into the kitchen where the Honda keys were hanging on the wall key bracket.

Four miles away stood the Memorial Hospital complex on the corner of Beach Blvd and University Drive.  Taking the first step out the door was becoming more difficult with each tick of the wall clock and I knew if I stayed at home Judy would probably find me cold lying stretched across the bed the next day.  I reached for the Honda keys.

Flipping on the back porch light, I stepped out and filled Lily's water and dog food bowl, telling her I'd be back soon.

The back route through the neighborhood was uneventful. Winter's stars twinkled brilliantly high in the sky.  Cool night air flowing through the half rolled down drivers door window temporarily renewed my labored breathing, lifting my spirit.  Praying for God to save me, I suspected a heart attack though could not reason how or why.

The trip to Memorial only took five precious minutes yet during those five ticks around the clock's face much of my adult life flashed back through my thoughts.

In my haste to fly through life I was truly neglecting my body's real needs.  In my rush to become the American success story I ended up deceiving myself into believing all the limited diet and intense exercise efforts were good for my body when in fact I was actually destroying it.

A twenty five pound dumbbell had for the longest time sat by the back door.  Each time I came into or left the house I'd pump the iron over my head believing the anaerobic muscle building would provide long term benefits.  After a bout with colon cancer in my early fifties I'd implemented a high fiber diet, daily partaking of the garden fresh hummus I'd make every day or so.

We cooked solely with olive oil and I believed the virgin liquid was going to be a major reason for my personal long term cardiovascular health.

Hard physical labor was no stranger to our household.  Judy was always working in the backyard vegetable garden.  I had just finished a marvelous green roof where I literally carried two tons of planting media up stairs, on my back, to the roof.  I looked good and felt even better.  Florida Trend magazine had just published an article on the trend setting Breaking Ground Contracting living roof.

Yet other issues were silently eating away at my body.

Physical, mental and emotional stress fed hypertension.  Each uptick in systolic or diastolic compromised bit by bit those hidden flaws in my Marfan body's arterial elasticity and cardiovascular structure.

But now, pulling into the Memorial Hospital's quiet parking lot, the truth shown brighter than the eerily buzzing tall evening halogen lights.  All the hurtling forward at breath-taking speeds through time and space to make a living, raise a family and get things done had really only shortened my life.

Unfortunately I pulled the Honda into the parking garage located at the far end of the health campus from the emergency room.  Always know where you should park with respect to the location of your local hospital's emergency room.  Trial runs in the car are a good idea before you find yourself in need to really seek emergency services.

I never figured out why 911 and an ambulance ride was not my first choice.  Perhaps my decision to drive was a subconscious decision consistent with stubborn attitude of doing everything myself.  Family 911 drills, without of course actually calling 911, are also probably a good idea.

The walk to the emergency room was slow and painful.  So many times I wanted to sit down and rest yet I kept walking, knowing that as soon as I sat down the end would come.  Turning another building corner the bright neon ER lights loomed just ahead and as I approached the automatic sliding doors a wave of relief flowed around and over me.

The nurse stationed behind the desk later told my wife I appeared white as a sheet, and barely speaking, clasping my chest, telling them I suspected a heart attack.  Memorial Hospital's staff on call that night included a young surgeon, Dr. Nathan Bates and his team and a CT scan quickly told them about my acute root to foot aortic dissection.

Hospital staff called Judy and began prepping me for surgical replacement of the aortic valve with a St. Jude mechanical device and then removal of the dissected ascending aortic arch and replacement with a Dacron graft.

During the eight hour surgery my heart was put on bypass and body temperature lowered to thirty four degrees fahrenheit.  Any doubts of life after death vanished once the operation was complete and deemed a success.  As I lay practically lifeless on the operating table my spirit, in very tangible form and awareness floated in the air above the doctors and nurses.  Cloaked in what I can only describe as immense love and comfort, the thoracic surgeon's procedure below was clearly visible.  I wasn't carrying anything with me that I'd accumulated in life and I wasn't even concerned much too much about anything I'd left behind.  I was very focused on the present moment and the pervasive loving warmth filling my new body.

Yet I only had a disconnected interest in the operation on my human body.  I was more curious of my new body, a spiritual body but one that was very real.  Immediately I knew that I'd be returning to the prostrate human form laying on the table.  Floating in the room my spiritual body kept bumping into the ceiling and floating back down towards my human form until I could move back away once more.  Hovering above the surgical team a brief wave of disappointment filled my thoughts.  Continuing the afterlife journey was not an option for me.  If I was supposed to die then I would have been able to move through the ceiling and on along my journey.

The warmth of eternal love held me throughout the entire procedure and in the end stood in stark contrast to waking up in the recovery room only to throw up volumes of fluid all over my chest.  Barfing never felt so good.

Subsequent to the initial operation my Dacron graft became infected with some type of unidentifiable fungus and I experienced holes in my chest, wound vacs taped to my chest, months of a pick line and daily IV antibiotic and antifungal sessions, additional surgeries to remove infections from around my heart, a permanently unstable sternum and an inoperable dissected descending aorta reaching into my renal and iliac arteries down to my foot.

We think we are boss of our cardiovascular system and for that matter most all other aspects of our physical body.  I know I did.  We imagine we can tell the body to do this and do that and to regenerate each time we are dietarily or lifestyle abusive.  We wrongly assume complete control over our body and think we know all things about how our bodies function when in fact only our sensory processes gives us a limited window of knowledge into our human functioning.

Our arteries may clog completely while we are unaware of the damage until an ischemic event.  Cancer may inflict many of our organs before we know of its' presence.  Alzheimer disease may establish a foothold in our brains many years prior to us exhibiting the first symptom of dementia.  On the grand scale of body knowledge, most of us really know very little.  'Out of sight, out of mind' has become our officially unrecognized health status motto.

All the diet and exercise improvements I had implemented over the previous few years were noble attempts to heal.  But the were too little and way too late.  I really wish I this blog had been available to me fifteen or twenty years ago.  Had I listened to my own words I plant to share here over time then maybe some of the pain could have been avoided.

Ted Rhodes, RN, was my home health care nurse and the person who saved my life by realizing the throbbing red knot on my chest was a serious infection and sent me to the surgeon's office.  Ted, though I'll never know if he seriously believed I'd heal or was just trying to be encouraging, one day told me that I'd be at the beach with my one more after healing progressed.  His much needed encouragement that day was one of the reasons I began to believe in the possibility of healing.

Today my hope is that by freely sharing the experiences I encountered, I might inspire others to embark on a an adventure of cardiovascular health.  Otherwise preventable chronic illnesses can turn an enjoyable middle or elder age into absolute misery.  Integrating a new life adventure, good food and peaceful spirituality can transform pain into supple, youthful bliss.   Follow my progress here and feel free to share your experiences too.  Life can be way too short.  Cardiovascular health is so important.

Tuesday, April 23, 2013

Reduce Blood Pressure & Aorta Dissection Occurence with Watermelon

Over time we will blog here about how many foods affect blood pressure.  Of course, the higher the systolic and diastolic readings, the more likely a myocardial infarction, ischemic event or dissection can occur.

Watermelon is easy to grow and supports cardiovascular health!


Keeping blood pressure below 120/ 70 should be a priority!  I like to see mine run 110/60, especially  with Marfan Syndrome and a completely dissected descending aorta.

Of course medications always help to keep blood pressure low, but I have found that by including watermelon in my diet it is much easier to reach those target metrics.  This is especially helpful if I am traveling and end up eating more processed or salty foods than I'd like to.

Besides, there is nothing better than an ice cold slice or chunk of watermelon.  Good for the kidneys too!

Check out an article about Florida State University's research into how watermelon reduces blood pressure here.

Monday, April 22, 2013

Marfan Syndrome, Physical Characteristics in the Family

The photo here shows my two wonderful teenage children, one in college already and the other active in High School.  According to the last echo-cardiogram both of their aortas are already beginning to dilate.

Marfan Syndrome physical characteristics
As a child I too was tall and lanky, with long fingers, long arms and legs and a thin-skinny build.  Though these physical characteristics are not always indicative of Marfan Syndrome, they may be.

I am glad that we now know of the connective tissue issues our family members experience.  Knowledge is important.  Understanding and tracking health issues associated with Marfan Syndrome can save lives.  Whereas I never know I had connective tissue problems until  my aorta dissected, we know the kids have these issues and we can address them before acute problems arise.

Some of the symptoms I regularly experienced as a child included; sprained wrists and ankles, collapsed arches, pulled back muscles, multiple hernia surgeries, stomach hernias and then finally a completely dissected and aneurysed aorta.

The National Marfan Foundation website is an excellent place to learn more about this health issue.

Education about the medical issues associated with Marfan is critically important.  Know what resources are available to help you or others who may suffer from potentially life threatening health problems arising from Marfan related problems.

I'll be posting more soon about my unexpected aortic dissection and how I've coped and what I hope to do, as my primary care physician says is my 'full time business' - to stay alive.