|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.