I live a life of uncertainty, not knowing what each new moment will bring. Through my routines and rituals I create a sense of stability that allows me to move through this world. I am not alone in this charade; I am simply one of the few who know how paper thin this illusion is.
We can get lost talking and thinking of the uncertainty of world events and all the variables leading to endless possibilities. But I am not so high minded to consider my small form as something that could change the streams of existence out there.
In here, in my tiny life as perceived by this mind-body, there is enough to watch.
The body, weak with chronic illness and pain, surprises me each day with what it can do. Sometimes it catches me off guard with what it cannot do. So I have learned to love the unexpected.
My new cardiologist thinks he can fix the random hypoxia that sends me into loopy episodes of confusion, which spawn headaches, weakness and extreme exhaustion. He wants to run a wire through my leg vein to place a metal device in my heart to close a flap that keeps opening. Platypnea Orthodeoxia Syndrome, he excitedly called it. I’m Number 7 of the patients he has met in the past 10 years who have what he called in his conference paper a Consequential Inconsequential PFO.
Most people who have a PFO in the heart have no issues. Although some have strokes. And others like me, get migraines. And even fewer like me, get hypoxia…or hypoxemia if you want to be specific. The hypoxia – low oxygen in the tissues – has not been proven in my case, but my oximeter clearly shows the hypoxemia – low oxygen in the blood. In typical cases of this rare condition, the PFO becomes stuck open when standing or sitting up, then closes when lying down, and the episodes can be reproduced. For me, the trigger is hidden; at least I have not been able to figure it out in the past 10 years of random bouts of loopy-ness. I accept this diagnosis of an unusual presentation of a rare disease as yet another aspect of my uncertain life.
The cardiologist wanted to see if any of the prior episodes had resulted in a stroke, so he sent me for a brain MRI. I had an MRI before, long ago, when I first began this quest to stop the episodes, which came back normal. Back then, I also had undiagnosed low blood pressure, so the episodes came with the extra bonus of momentary black-outs complete with falling down. When the doctors figured out the low blood pressure, they told me to “salt load” so I eat a ton of salt now. It helps. No more black-outs, but my head still feels weird at times. I thought it was being caused by a low heart rate, which I also often have, but once I got my own oximeter, then I knew about the hypoxemia. Thank you smart phone for your fun little app!
About a month ago, I went into the tube with earplugs for the MRI scan of my brain. Exhausted from running a few errands, I welcomed the chance to be horizontal. I decided to treat the loud knocks and pings from the machine as techno music and let my mind rest in meditation. My third eye pulsed and my body became light. Near the end, Vajrayogini appeared before me. Encased in a ring of fire, she smiled. A garland of skulls hung about her neck. I was dazzled by the beauty of her red-orange skin and I felt such deep love. Her arrival was a surprise since she is one I have explored only briefly in passing, and never have I meditated upon her form until she appeared in front of me. I rose from the MRI bed refreshed and renewed. On the way home, I saw a rainbow next to a bright spot in the grey cloud covered sky. It was not an ordinary strip of color, but more of a rectangular block that hung in front of me as the sun began to sink in another part of the sky.
Because the heart device is made partly of nickel, I went for allergy testing. I reacted to gold, which is strange because I often wear gold jewelry without any problems. I also reacted to nickel.
When I returned to the cardiologist to hear the test results and to let him know about the nickel allergy, I saw similar bright spot and rainbow block in the sky. I have no idea what that means, but it seemed kind of cool.
The cardiologist is taking the nickel allergy seriously, and after attempting to find a non-nickel device without success, he convinced the manufacturer to send him a sample device so I can do another allergy test with it to see if the coating is enough to prevent a reaction. I’m waiting for the device to arrive, waiting with uncertainty. Will I be allergic to it? What if my skin does not break out, but then I have a reaction after it is implanted? How would we even know?
The MRI did not show any obvious signs of stroke, but it did show areas of “T2 hyperintensities in the periventricular and subcortical white matter” that the cardiologist did not know how to interpret. So more questions for another doctor; this time a neurologist gets to face my uncertainty.
It also showed an unusually large pituitary gland measuring 9mm x 7mm x 12mm. In the spiritual world, the pituitary gland is often associated with the third eye. And then there was that whole vision of Vajrayogini. At times I feel like the Divine Mother is playing with me to see what fears she can find. I mean, what is the one thing more frightening than heart surgery? Brain surgery of course!
The report says the oversized pituitary gland could simply be a normal variant, but it recommends pituitary function tests. So I let another doctor draw the blood, and now I wait for results and more uncertainty.
As I move through all of these tests, the big uncertainty of what if this heart procedure does not help looms in my mind. I’ve spoken with another cardiologist who agrees the PFO getting stuck open is a reasonable answer to the random hypoxemia. He said the only way oxygen levels can drop and come back up so quickly is if there is unoxygenated blood mixing with oxygenated blood. All those years ago, when the PFO was first discovered, I remember the technician exclaiming that it could cause my episodes as we watched the bubbles cross over from one atrium to the other. That is before he realized he was not supposed to tell me anything! But the cardiologist back then said PFO’s are inconsequential and cannot cause symptoms. His response always made me wonder why he went looking for it if it doesn’t cause problems.
The opposite extreme also arises in my mind: what if this fixes all that has gone wrong with my entire body? Will stopping the non-oxygenated blood from crossing my heart allow the body to finally heal? I always love the fantasy of being healthy and strong, where I can work all day and still have energy to play at night. And I could stop taking the spice rack full of pills and supplements. What a dream that would be!
And this brings me to an additional point of uncertainty: the notice from my rheumatologist stating she is retiring. This means I need to find someone else to help me manage the pain, which includes a prescription for a narcotic. In this world of opioid epidemic legislation, this is somewhat of a big deal. So yet another doctor, and another batch of uncertainties.
But if the heart surgery fixes everything, I won’t need pain medication. But if it fixes only the hypoxemia, I will still need the medication. But because of the nickel allergy, I have to wait to schedule the procedure until I can test the device.
Why does uncertainty so often come with the word but?
With the approaching holidays, the only appointments I can get with doctors are in January. So I will wait a few weeks longer with my uncertainty.
Through all of these endless ruminations of the mind and trials of the body, one thing is certain: my heart – not the physical one with the hole in it – my inner heart is stable in a field of love that shines light in this world for me and all to see. When the uncertainty weighs on me, all I need do is breathe in and breathe out, knowing this is it. Of this Light I have no doubt. And for that, in this life of uncertainty, I am deeply grateful.
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