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.
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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!