Tuesday, April 25, 2017

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.

Friday, April 14, 2017

Support Your Connective Tissues, Think Rationally Stress Less

It is hard denying adrenaline's power commensal with a Type 'A' personality.
Alpha hats rule!

Probably my drive over the years to be 'a leader of the pack' has been partially responsible for the open heart aorta surgeries I've required.

Today, my increased awareness of the hormone's destructive power is allowing me to replace the automatic flight or fight responses with a more rational response when I'm faced with challenges.

But unfortunately those daily challenges perceived by me to be a direct confrontation - such as another driver cutting me off on the road - still produce that all too familiar, mostly unproductive adrenaline surge.

When challenged, my blood pressure rises and stress increases as cortisol pulses through my veins.  In the car, fingers tighten around the steering wheel.  Words not normally suitable for public use whirl around my amygdala while my frontal cortex wants to slip into hibernation mode.

But with the passing of a few dangerous seconds the icy layer blanketing my cortex's rational  systems thaws and the red quickly drains from my face.

My pulse drops back to the usual forty to fifty beats per minute.

By now the offending car is far out in front of me.

I'm not going to speed after it to show them who is...., who is what? Maybe more quickly prone to push an accelerator pedal down?  Best at petal to the metal?  Come on.

Really, was it super significant that an aggressive driver cut me off?

Yes and No.  And the struggle between the ancient survival portion of my brain and the more modern frontal cortex continues.

But my connective tissue limitations require me to deal with fight or flight response in a way that supports my cardiovascular system rather than further damaging my aorta.

My Type A aspect urges for resolution by dominance while the Beta aspect (Type B) presses for a ' do what benefits you most longterm' ending.

As a human driven by testosterone I struggle with adrenaline and cortisol prompted stress daily.

As a connective tissue disorder (Marfan) challenged person who has experienced first hand the damage these influential hormones can cause, I am finally learning to recognize the first signs of situational generated stress and now learning to initiate rational mitigating responses.

Its not easy, honestly.  It is a work in progress though but I am improving.

Self recognition of my dominant Type A tendencies was a good start.

Today, living with a dissected descending aorta (ascending is now Dacron) requires stress control.  Stress causes sheer pressures to build and aortic inflammation to occur.  I need neither if I want to live.

Research shows that emotional stress can trigger an aortic dissection.

So stress control is extremely important to those of us challenged by Marfan, Loeys-Dietz, Ehlers-Danlos or any other connective tissue disorder or syndrome.

But just when I thought I was doing better lately, a red mustang cut in front of me yesterday boasting a big bumper sticker that read 'If you are reading this you are loosing!!!'.

I always drive no faster than the speed limit.  My driving capability is a privilege I absolutely need, and besides - whoever printed up that bumper sticker couldn't even spell.

Four years ago my license was medically revoked because of my dissection.   Today however it has been restored and I take the privilege of driving very seriously.

Three years of living without a driver's license taught me many things.  Near the top of the list is 'do not get a ticket and jeopardize the driving privilege'.  So I stick to the speed limit.

Many drivers consider the speed limit to be 'grandpa slow'.  So on a daily basis drivers, young and old whiz around me.  Most just whiz by.  Some blow their horns.  A few flip me off.

All the whizzing by does bother me but my rational frontal cortex has learned to be boss.  Amygdala is still active but now understands about consequences and the 'time-out' corner.  Amygdala has learned of downsides of 'the ticket'.

At first this shift from Type A to Type B responses in my life made me feel as though I didn't live up to what evolution had programmed my body to be.  Survival required brute dominance, right?  I mean look at the lions and gorillas and baboons fight for 'boss' rights. I had to be first in line at the traffic light.

Nature selects for Type A, Alpha, 'leader' personalities, correct?  Think about mating rights.

Not necessarily.

Though Type A personalities may 'earn' certain short term mating rights or dominance positions in some species, Type A lifestyles also carry many downsides too.

Alpha personalities normally possess higher stress levels, and as some research shows may harbor even lower intelligence levels.

What does that mean to a connective tissue challenged individual?

Simply put, Type A driven actions may move one to the front of the line but they may not be there long if the adrenaline and cortisol surges damage the cardiovascular system to the point of a dissection or aneurysm failure.

There is a very interesting report entitled "We Can All Relate To Stressed Out Baboons", where Stanford physiologist Robert Sapolsky is reported to suggest that the stress of competition associated with an Alpha personality actually leads to disease and depression.

Sapolsky goes on to theorize that those who can differentiate between real threats (requiring life saving flight or fight responses) and common competitive but non-survival situations may have much lower bodily stress levels.

The implications here are especially important for connective tissue challenged persons.

High levels of stress are more damaging to cardiovascular systems than smoking, according to Sapolsky.

Increased cardiovascular stress is the last thing anyone needs, especially if looking to minimize aortic dissection risks.

Today I'm thinking whoever printed the bumper sticker about 'loosing' may have actually been a Beta personality, one who figured out how to make money off of the Alpha's irrational drive to be the brute and possibility their inability to spell correctly.

I will always struggle with dominance stress.  My long legs propel me to the front of any group walk about.  My amygdala still whispers about being the fastest and best-est.

No longer though do I think the Alpha personality is superior to the rational, calmer, more socially integrated approach.

With the Alpha approach the game is controlled by others so paradoxically we always end up 'loosing'.

Beta responses allow us much more control, especially to the connective tissue challenged population who are genetically predisposition to potential aortic tearing.

And maybe ultimately a more extended shot at mating too.

Take that you Alpha powered red mustang!

You are the one who is really 'loosing'!