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.

Aortic Dissection and Aneurysm Symptoms, Living with Marfan Syndrome

It happens just too often.  Someone arrives in the hospital emergency room with unusual pain.

Med ID tags can save your life

The inexperienced intern diagnoses the issue as an ischemic event such as a TIA or similar.  The patient's vitals present normal all the time he or she lay on the bed, their aorta, the main blood carrying artery flowing down from their heart through their chest and abdomen into their legs, slowing tearing and leaking like a perforated water balloon.  Then suddenly comes the big rupture and fatal release of blood.

I am not a doctor nor am I a medical researcher.  What I am though gives as much credentials as anyone to talk about what symptoms may occur before a major aortic dissection.  My aorta was slowly aneurysing for decades.  Then in November 2011 it ruptured, tearing out the interior wall, know as the intima, from the root and aortic valve up over the ascending arch, rippling into side arteries, down through my chest into my renal arteries, down my iliac arteries into my leg, ending in my right foot.  One great big tear.

Oh yeah, I felt the entire Type A Debakey tear in slow motion, like someone ripping an old cotton sheet from top to bottom.  Today I live with a wonderful metallic St. Jude aortic valve and a Dacron graft for the ascending aorta.  Unfortunately, my descending aorta is still dissected and is being managed my medications.

Last week my wife and I went to the local emergency room after she had a severe attack of kidney stones.  We wanted to make sure there was no myocardial infarction occurring.  Fortunately her heart and cardiovascular system were OK.  Unfortunately for her though, kidney stones are extremely painful.  But as we waited in the emergency room for the results of the CT scan, the conversation turned to me being a dissection survivor.

The emergency room nurse told us the story of a young man who had come into the emergency room the night before, presenting with symptoms of a stroke so they thought, strange pain in his back, down into his legs.  While in the emergency room with tests in progress, the young man was experiencing an aortic dissection yet no one knew.  Before a CT scan could be run and proper interventory action provided, his aorta ruptured and he died.

This scenario happens way to often, even though aortic aneurysms and dissections are not so common when compared to heart attack or stroke.

I am challenged with Marfan Syndrome, struggling with connective tissue disorders and this was an underlying cause of my dissection.  With Marfan, the connective, structural fibrillin protein does not function properly.  Since blood vessels are built with connective tissue, especially along the interior surfaces, defective connective tissue can weaken the entire cardiovascular structure.

Not all of those reading this article will have issues associated with Marfan, but some may and I hope by sharing those symptoms I encountered and even if one fatal dissection or aneurysm is avoided then it has been worth the time to discuss.

Today I am 56 years old.  I did not know about this connective tissue until I was in my early fifties.  However there were many recognizable events in my life that were pointing to connective tissue issues.

Briefly, though there are different types of connective tissue (CT), the main purpose of CT is to hold our body together.  Cell membranes are a type of connective tissue, as well as ligaments, cartridge, muscles and other tissue that is all interconnected with bones and the structure of the body.  Connective tissue gives the inside of our blood vessels the elasticity and strength needed to withstand the constant pumping and flow of blood through our body.

Connective tissue can be weakened through genetic maladies, such as Marfan and other similar disorders like Ehlers Danlos and connective tissue can be also affected by diet and other environmental factors, such as scurvy where a lack of vitamin C impacts collagen function in our body.  Systemic autoimmune deficiencies may also contribute to or be a part of various connective tissue disorders.  Bottom line is the body begins to fall apart when connective tissue disorders prevail.  This is all bad for our health but particularly dangerous when the connective tissue in our cardiovascular system begins to fall apart.

And so when I was young and my long, skinny ankles and wrists would sprain frequently, that was a sign of a connective tissue issue.

As I grew and required braces, the malformation of my palate was another indicator of potential connective tissue problems.

The inguinal and abdominal hernias I experienced as an infant and then subsequently throughout my life, including multiple repair surgeries, were another indicator of serious connective tissues.

These were all signs that my body was literally tearing apart.  But I did not recognize these as imminently dangerous events, rather they were more of a physical inconvenience.

Then as I aged and entered my forties and fifties my blood pressure, which had been normal all my life began to creep up ever so slightly, plateauing out around 140/85.  I thought nothing of 140/85, probably because the blood pressure was my presently reality at the time and I was functioning like any other normal adult.

Today, if I had a blood pressure of 140/85 I'd be headed to the doctors office or cardiologist's as quick as I could get there.

I feel safe today keeping a blood pressure with my weakened aorta of around 115/60 maximum.

For several years before my dissection I would occasionally feel a quick tearing sensation in my neck that lasted about two or three seconds and afterward which I'd have a three or four minute strong headache that would quickly subside.  I believe these events, all of which would occur while I was involved with strenuous work or exercise, were all small tearing events of the intima, or the interior aortic wall.

Today I would recognize the culmination of all these events as the start of a serious medical problem requiring intervention, but I did not understand what was happening during those earlier years.

The night of the big dissection, I'd been adding to, modifying the rooftop garden over our garage, working on the hot roof, bending and squatting for most of the day.  After showering I sat down and the tear began.

Imagine a slow rip of a long cotton sheet, or the unzipping of the camping tent's front door, or the paper covering a Christmas present being torn off by an excited child.  It felt like a tear, a very painful tear starting in my neck, radiating up through my jaw into my neck and down my back int my legs.

Then came the immense headache.

I laid down on the bed thinking the symptoms would subside but they just got worse.  The pain was not going away.  And so I drove myself to the hospital where the rest is history (you can read more of my surgical adventure here).

Fortunately the ER doctor on duty had a CT Scan run immediately.  I still remember the CT tech exclaiming "wow!  look at the size of his aorta!"

So today I check my blood pressure multiple times each day.  I highly recommend dietary and lifestyle changes be made as soon as possible if one's blood pressure is anywhere near 140/80 (but listen to your doctor first and foremost).  I also wear a med ID necklace noting my medications and condition.

Daily blood pressure monitoring is important for those with connective tissue disorders #Marfan

Sometimes the dissection cannot be detected right away using normal vitals.

Read up on connective tissue disorders.  Understand cardiovascular health and take your blood pressure daily.

The life you save may be your own.