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.

Aortic Dissection, Connective Tissue Issues; Coping With All the Information

I've usually way too many apps open on my phone and am surprised to see how much faster my iPhone runs when I close them all except for the one presently in use.

Corkscrew Swamp hiking for Aortic Health

"Be here now."

More relevant to me than the app analogy is an image of paper file folders scattered across a desktop, flung open, stacks of typed or handwritten pages lying everywhere.  A jumbled up mess of a lot of information is not only confusing but disheartening too.

"Peace be still."

Life with a dissected aorta and Marfan Syndrome (the connective tissue disorder in part responsible for my torn aorta) and with chronic kidney disease from multiple open heart surgeries is a challenge not only on the physical limitation front but also because of the massive amounts of health information I must process daily.

Will this particular food raise your INR or drop the INR and cause a clot?

What about the bleeding an activity might cause if I get bumped or scraped?

What will I be doing when its time to take my beta-blocker that makes me want to fall asleep?

How long do dissectees usually survive?

Daily the questions fill the desktop of my mind like pages from the scattered, jumbled files or too many open apps.

My solution lately is to imagine taking a break and neatly filing all the paperwork and files back into the file cabinet in my back pocket.  Except for the one file I am using here and now.

Sometimes I switch to the app analogy and close all the open apps in my mind except for the one I need now.

So if I am driving then all the thoughts of medications, things I need to do, people I need to stay in touch with, my yoga and swimming I have not done for the day, my blog which I have not touched in a year - well all those thoughts disappear and my focus is only on the road and those cars around me.

Which is the way it should be.

Peace be still.  My blood pressure falls back to where it should be.

The people I am with take notice that I am more engaged presently.

And when I practice this mode of information management my chronic depression from living with  these challenging physical conditions begins to subside.

Be here now.

Close the files.  Close the apps.

Try telling yourself "Close the files. Close the apps" next time you are overwhelmed with a barrage of  information, thoughts and ideas running rampant.

Pease be still.

And then I can more easily deal with my "new reality" of living with a torn aorta.

When, in fact the "new reality" I've been reminding myself daily of is not really a "new reality".

Sure my aorta was not torn before my dissection but it was going to happen.  I just didn't know it.

Now, today I know I live with a pre-disposition (and a torn aorta) to connective tissue tears and all the cardiovascular and muscular problems associated with Marfan.

Understanding my dissection life is not a new, strange and unknown life for me is important.

I've always lived with the potential for cardiovascular problems, I just did not know it.  But today I understand.

The difference today is I have all the folders and information now about these chronic health problems whereas before I did not.  I am still the same person physically today yet I now know.

And all this new knowledge is what causes much of my anxiety.

I am overwhelmed and depressed until I remember....

Close the files.  Close the apps.

Peace be still.

Be here now.

And its all ok.

My back pocket file cabinet is especially important when I am writing this blog, or laying down to sleep or working on my art or doing yoga or preparing food or doing chores, you see I close out all the other apps, especially those files of mortality or other unpleasantries and focus on the task at hand.  Life is much easier when the winds of a thousand pages are not constantly buffeting my curly thin hair.

So when the dermatologist's office called yesterday morning and told me the mole they removed from my leg biopsied positive for melanoma, all the files flew out of the cabinet back onto the desktop of my life once more.

For a while I did the whole 'search the internet for answers on how to put the files back to the way they were before the phone call thing'.

Then I realized the melanoma had been there before yesterday, probably long before yesterday and the reality was similar to when I learned about my Marfan Dx.  I now had information I hadn't had before.

So I quickly filed the scattered papers and folders and put them back into the filing cabinet and closed out all those extra apps.

Instead of fretting about the 'M' word Dx we went to Corkscrew Swamp and watched the sun go down and the almost full moon rise.

And I enjoyed my evening.

The dermatologist office has a great MOH surgeon and they are scheduling a surgery to remove the affected skin area.  I'll open the 'mole' file as I have to just like I do with the 'dissection' file.

But I will also keep them closed when in not in use.

Scattered pages, even if they are full of important information, are useless when in an out of focused jumble.

So close out your excess files and put them away.

Be here now.

Life is really a privilege and I so enjoy focusing on each breath, each moment and each day.

Peace, be still.

Dissection Life: A Father's Day message to My Children

The last teenager is out of the nest now.

Father' Day, Dissection Life Message to His Kids

They are all gone.

Our job was to raise them to where they could fly on their own.

The last one is now a freshman in the university system.

Sure they have a ways to go, however I truly believe they could make it on their own now.

And since today is Father's Day I'm going to send and open letter to my children.  I am putting into words below the thoughts of a Father's heart and dissected aorta.

The theme of my letter to my children is: Disappointment.

June 19, 2016

Re: Disappointment

Dear Children:

There are no more of you in the house and silence is certainly loud.

Take my thoughts in this letter with you the rest of your life.  What I want to tell you is advice I dearly hope you will remember the rest of your years.

I have always, always told you to follow your heart.  I may have let you know my opinion but ultimately I encouraged you, and still do, to follow your heart when making a decision about your life.

Listen to what others say because different perspectives can help guide you through life challenging decisions.  Then follow your heart.

If I could tell you one thing now that I hope you will never forget it would be the following sentence:

Dad says, "It is ok to disappoint others, however never, never disappoint yourself".

Think about it.

Each of you have special talents and very individualized passions.  Your Mom and I always want the best for you, but sometimes the best does not lie in conformance to some traditional way of thinking, politics or spirituality.

Times are changing.  Don't stick your life away in a pre-labeled folder file.

Each of you will encounter opportunities where you could do great things for the world.

Don't ever let anyone or anything hold you back.  If your heart says, 'Yes', ask it once more to make sure then follow with all skill, love and desire.

If you fall, pick yourself up and try again.

But please, please do not repress you heart's passions because of what someone else thinks, or the fear of 'disappointing' someone.

Not that it matters, but the only time I'd be disappointed in you if you were living your life the way someone else thought you should live it.

So.  Disappointment is the word.

Learn to validate your own character by determining who you are going to kindly (Dad says kindly is best) disappoint.

Try carrying an "I am going to disappoint" list in your wallet.  Anytime you feel that old sense of "he or she doesn't approve of what I want to do or am doing', add the name of the disappointed person to your list.  Write down the reason why and how you feel.

Sleep on this.

Then go ahead and disappoint them by doing what your heart is telling you to do.

This isn't easy for a father to say.  I always think I know best.

But one thing aortic dissection life has taught me is "life is so short'.

Always, always follow your heart and don't look back.

As Billy Joel said, "You can get what you want, or you can just get old."

Kindly disappointing people is part of the journey.  Just make sure it's others who are disappointed, not you.

Love you, Dad.

Dissection Life, Best To Read The Ingredients Before Drinking

Everything about #Dissection life is a learning process. Several times members here have posted about 'probiotics' being important to an '#Aorta Healthy" lifestyle and I am convinced its true.

Added caffeine in kombucha? #Dissection life

Always read the fine print ingredients #Dissection life

YIKES! I stopped in the grocer today to pick up some fresh ginger root for smoothies and purchased a Kombucha (ginger flavored). I thought I was being healthy.
Arriving home I laid down for my self-imposed every two hour leg elevation and drank the entire bottle, even though vinegar based drinks are kinda hard for me to swallow. After all - the more bitter the more better.  
So within ten minutes PACs and arrhythmias began. Now my heart and aorta hurts. I've been off caffeine for about six months now after reviewing the bottle I discovered this drink had 80 mg caffeine. Probably not much for most, but for a  #Dissection life adventurer, a no-no and enough to send me into PACs.  
OK I should read the label, even the fine print. The label read "Gluten free, Non-Dairy, Vegan". But I should never assume anything...  
The answer just now? Drink lots of water and meditate to calm my racing out of sync heart.  
Still learning all about this #Dissection life.

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!

Back to Blogging about Aortic Dissection Life

I've been quiet for a long time now.  Mostly because I get into writers funk brought on by depression from take your pick:

• myriad of medications
• fatigue
• life gets in the way
• blah blah blah

Aorta Dissection Life - Bandaids and Compression Socks

But in the interim I've had a lot of post ideas develop in my mind.

Try as hard as I do to forget them- which is actually quite easy to do - they keep surfacing in the back of my mind during 2 A.M. insomnia episodes.

So I thought I'd start trying to bring this blog site back up to date.

And just writing this little bit is a way to jump start the whole blogging process once more.

Look for some of my thoughts later this weekend.

But for now, today has been the typical Dissection Life morning.  I wake up and my thumb is still bleeding a little from the small knife nick I gave it in the kitchen day before yesterday.

Stumble to the bathroom to find bandaids.  Cant get the bandaid cover paper off the bandaid.  Finally get the paper cover off now the entire bandaid is bloody.  Rinse off the bandaid now the bandaid won't stick.

Repeat the above paragraph until I get a clean, non-bloody bandaid on.

In the kitchen fix a cup of Starbucks Via Instant Columbian.  So good to smell the aroma.

Carry compression socks to living room to put on.  Sit on floor because I've made a commitment to sit on the floor each time I put on socks or shoes so I can always stay in enough shape to get up off the floor.  If I sit on the floor and then stand back up ten times a day then this is equivalent to 3,650 squats a year.  Ten a day is much easier.

Bummer!  Compression socks are inside out!  It is hard enough to put them on right side out.  Oh feck!

Reach my thumb into the inside out part of the compression socks, which is really the right side out part and try to pull them back out to the appropriate side out but them won't budge.  Double feck!!

Yank on the inside out sock tip and the bandaid rips off.

Back to the band aids in the bathroom.

Lol!  Just another Dissection Life day!

More tomorrow!