Let’s Not Get Carried Away.
“I’ll schedule your CT scan and surgeon’s visit while you are still here.” The nurse said. “So that you can get appointments without them being lost in the holiday shuffle.” she added as she pulled the curtain closing off the little area where I lay on a bed with an IV, a blood pressure cuff, and a pressure bandage trailing from my arms — while my wife was standing beside the bed, gently holding my hand.
The heart interventionist (I think I could be forgiven for not knowing the pecking order and skill sets of doctors I would have previously just lumped together as “cardiologists” before this experience) came in some time after the procedure. Procedure — almost seems like a trivialization of surgery that runs a line through an artery in your wrist; snaking it into your heart, risking stroke or heart attack to look around with a camera. But that’s probably another story for another day.
The interventionist came in with a spring in his step and an energy that seemed to make him vibrate ever so subtly. He had been professional and genial when his team was prepping me for the cath. He seemed to be as nice a guy as he had appeared in the information I’d gathered online before the procedure. Now, he almost seemed like a boy on Christmas morning — which was just a few days away.
“I have practiced for sixteen years,” he began, “and have only seen two of these.” “One gentleman yesterday. And you, today.”
He picked up a marker and turned to the whiteboard, apologizing for his lack of artistic skill as he drew a rough, very rough, sketch of my heart and the right coronary artery that, from formation in my mother’s womb, had attached to the wrong part of my heart.
By this point, in the interventionist’s mind, surgery was a foregone conclusion. Over the course of emails and appointments with various caregivers, including the thoracic surgeon’s office, it became obvious that that was everyone’s conclusion.
My wonderful wife, a health professional herself, and a believer in expert opinions, also started preparing for my open heart surgery. And, now armed with the knowledge that my birth defect, which is usually discovered in the autopsies of young athletic types who died unexpectedly, she was gripped by the thought that, at the slightest exertion, I might drop dead.
This might be a good time to mention that I am 60 years old.
What had brought me to this point — though the details are blurred by time, sleep, and the dailiness of life — was a recurring difficulty in breathing, previously identified irregular heartbeats becoming more noticeable, and an x-ray (when I thought I might have either flu or covid) from which professionals started using (or, alternately, avoiding the use of) the phrase congestive heart failure. I attributed the symptoms to the hundred pounds I need to lose; the fact that, for the past ten years, instead of running and lifting weights to break up the day, I had become more glued to my workstation seat for hours at a time; and that I still hadn’t completely stopped the bourbon flavored self-medication after my prior divorce.
Then came the tunnel vision. Not one of my symptoms but what I perceived from my caregivers who now had this novel condition in view. My primary caregiver, all three cardiologists, and the nurses that have helped along the way are, in my estimation, very competent and caring individuals. But, aside from my primary caregiver, they are all technicians of a specific (and thereby limited) cluster of skills. This situation reminds me of the aphorism that goes something like — if the only tool you have is a hammer, every problem looks like a nail — and, perhaps, a bit of “The Emperor’s New Clothes”.
We are still early in this little adventure but I have canceled one scheduled open-heart surgery appointment to get a second opinion. I worry that this opinion, too, is coming from another heart department instead of some more comprehensive group of medical professionals. But I’ll deal with that later.
I understand that my heart plumbing problem can only be fixed by surgery. What I don’t understand is why I am having the symptoms now — with the previously mentioned lifestyle insights firmly in mind. During the catheterization, it was also found that I have insufficient atherosclerosis to even entertain stints — pretty clean pipes for a southern man of my advanced years.
There are a lot of questions and concerns. I have spent a good deal of time combing through the available papers from NIH, PubMed, and a few universities for information about the defect that the doctors are fixated on. There are a couple of good (because they say what I think) inferences that, having survived to this point, there may be no need to ‘fix’ the defect. But that still leaves the question of what is the root cause of the current symptoms and how do I effectively fix that?
You should probably look at the arrogance betrayed in that last paragraph with the same incredulity that my wife does — and, in my less determined moments, I myself do. Who am I to question the decision of highly trained, competent professionals?
Then the technician in me kicks back in. While life doesn’t hang in the balance of my decisions today, as a long-time technician, I understand the lure of the novel, shiny object. I have seen numerous efforts to solve problems result in a blindly applied patch because someone got distracted by a ‘neat thing they hadn’t seen before’ and stopped looking for the root cause of the issue at hand.
And that, as you have likely surmised already, is the crux of my dilemma. It is not that I doubt the skill and care of my providers. It is that I think they’ve found a novelty and stopped looking for the root cause of the current problem — and its solution.
I may, indeed, need open heart surgery to fix this congenital defect (Did I mention that I’m 60?). But will that fix the current issue? Or, will it fix a lesser issue while letting the current cause continue to grow? When I ask the heart specialists, they aren’t giving a definitive answer. Perhaps they can’t. As smart as I think they are, I don’t think they have the perspective to do so.
They do say that I’ll not come off all of the side-effect-inducing medications that have been prescribed in the past two months. Sounds a bit like a challenge to me.
Who, in our current medical system, looks at the whole picture and sees how the parts fit together?
Is it the over-scheduled primary caregiver? Is it the specialist? Does it fall to the medically untrained patient? Hmm.
I understand that we don’t always get to know the root cause. We live in a good deal of ambiguity. Complexity makes it worse.
At this point, I’ve made changes to address the lifestyle choices that adversely affect health. I’m awaiting a second opinion while still engaging the first decision-makers. I probably need to ask my primary caregiver if there is someone in the system that is responsible for a more comprehensive look at the person — if I can figure out how to do it without being unduly offensive. I’ll continue to read and look for additional research — because that is what I do.
Mostly, what I’ll do is try to assuage the worries my wife now has because of this revelation. Part of this effort is just keeping my dark humor to myself.
*** NOTE — this is neither a complete account of all that has transpired in the past few weeks nor meant to infer any medical advice or direction for anyone (except perhaps my caregivers). ***
