Best Medical Advocate, We Must Be Our Own and Know How To Take Good Blood Pressure Readings!

This post is about the journey of becoming our own best health care advocate, and also how to take blood pressure readings.

American Heart Association Publishes How To Take Blood Pressure Directions,
Here is my home cuff reading today

I am forever grateful for the Memorial Hospital ER surgeon who fixed me the night my stretched aorta tore.  Thankful also for the St. Vincent's primary care physician I had post surgery who worked with me to understand my number one priority in life was to stay alive.

There have been some great doctors who helped me along recovery's path.  To these health care professionals I am grateful for their artisan healing touches.

There too have been many doctors and nurses though who were actually afraid of me.  It is so easy to see the lack confidence in a health care professional's face despite their efforts to hide their fear of not knowing what they are dealing with in me.  I love them too for they have taught me to be my own best health care advocate.

Lately my systolic blood pressure readings have been quite a bit higher when I visit a medical facility.  Aware of 'white coat syndrome' I brushed these anomalies off as just a result of the doctor's office stress.  But the 160+ systolic readings the nurses were measuring were disturbing to both them and especially to me with my descending dissection.

Back at home the readings on my arm cuff unit were normal (110/60).  My pulse usually hovers around 50 beats per minute or about one per second.  My home unit has been previously calibrated.

Either my home blood pressure cuff was incorrectly calibrated or the health care professional's understanding of how to use a stethoscope to obtain a blood pressure reading (auscultation) was flawed.

On the next visit to my primary care my systolic was high again, in the 160s.  The stress of wondering why I was being diagnosed with high systolic led to even higher blood pressure readings as my adrenaline kicked in.

What was going on?  I was asymptomatic with respect to normal high blood pressure symptoms and my home cuff was reading much lower.

My first thought centered around arm position.  Perhaps the practice of reading blood pressure when the arm was hanging down vertically instead of horizontal was the culprit.

The American Heart Association (AHA) recommends the cuff should be level with the heart while the arms rests on a flat surface.  Could my vertically hanging arm make a difference?  Read here for the AHA's guidelines.

Back at home I tried taking blood pressure readings with my arm resting in many different directions.  What I found was it really did not make a significant amount of difference how my arm was positioned with variances of ten points or so being the maximum.

Next I suggested to my health care professional they rest my arm per AHA protocol just to be consistent.  Ultimately though, arm positioning did not provide an answer to the 30 point or more differences between my home cuff and the health care professional's auscultation method.

In the auscultation method, the health care professional inflates the cuff to a pressure that stops blood flow with compression of the arm's brachial artery.  As pressure is released the brachial artery blood flow resumes and produces an audible sound known as a 'Korotkoff' sound (K-sound).  The pressure at which the Korotkoff sound is heard translates into the systolic blood pressure reading.

As additional cuff pressure is released the restriction in the brachial arterial decreases until finally there is no more audible tapping or k-sounds.  The pressure which no additional Korotkoff sounds are heard is the diastolic blood pressure reading.

Finally I asked the nurse to use a cart-based 'doctor-on-a-stick' unit to measure my blood pressure, just to see if there was a difference.  Perhaps the 'doc-on-a-stick' would exclude the heart valve noise.

The computerized cart based unit came back with a systolic reading significantly lower than the nurse's auscultatory method.  The nurse shrugged and suggested the variance was due to my 'white coat syndrome' or doctor visit stress levels.

Unfortunately, the medical clinic's high systolic readings were taking their toll on me.  Not only was I stressing over the worry what high systolic blood pressure could do to my existing descending aortic dissection, but my health care professionals were now suggesting changes to my medications to further manage my alleged hypertension.

Last thing I was interested in was higher doses of blood pressure medications.  Metoprolol already had me feeling like a tall, red headed zombie.

Back on the internet I searched on a few more specific term combinations.

One search returned a helpful article entitled, "Antecubital Transmission of Mechanical Valve Closure Sounds; Recognition of a Potential Source of Error During Blood Pressure Measurement".  The link here opens the article in a new window.

I had to read the article about five times.  Pumphead masks simplicity.

What I understood the paper discussion to propose was, because mechanical valve sounds travel through extravascular tissue they may be heard even when the cuff is inflated at high pressures.  Unless the health care professional is substantially familiar with what a mechanical valve sounds like through a stethoscope, a heart valve click could be mistaken for the first k-sound and a false systolic reading obtained.

One may ask, 'is this a big deal, really?'

Yes.  Patient worry about hypertension that may not exist is unnecessary.   Too, I have a St. Jude mechanical valve.  Maybe my health care professionals were hearing my valve clicks rather than Korotkoff sounds. Perhaps my systolic was not really that high.

More importantly, prescribing a patient additional hypertension medicines unnecessarily could have significant impact and perhaps even create damaging hypotension.

The most important take away is not blood pressure measurement procedure.  The most important takeaway I am learning from all this is I must be my own best health care advocate.

Trust in the health care system is so much better when I learn about, verify, confirm, obtain a second opinion and most of all trust my own instincts.  When in doubt step back then verify.

After all, our number one priority in life is to stay alive.  My doctor told me that.

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!

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.