Note: This is the third post in a series telling the story of my illness. To read the first two, look in the sidebar for the link list entitled "What’s Wrong With My Body and How It Got This Way."
I should write an ode to the sphygmomanometer, that nifty little instrument commonly used to measure blood pressure, for where would I be without it?
I was on the treadmill, wires streaming from my chest, bare boobs flopping in the breeze, a nurse tethered to my left arm by a manual sphygmomanometer. Dr. Paulsen had asked me a hundred questions. He had listened to my heart, lungs, and carotid arteries. He had palpated my abdomen and neck. He had taken my blood pressure and counted my heart beats in multiple positions. He was thoughtful, intent, and kind. He said that neurally mediated hypotension certainly could account for my symptoms. Even in the office he was seeing uncommon lability in my heart rate and blood pressure.
But, he said, my symptoms could be caused by something else. There could be something wrong with my heart. He wanted to check. So he called over to the stress-test room, and they said they could slip me in for an unscheduled run on the treadmill. I got my chest skin scrubbed raw and electrodes stuck on, and there I was, moving fast on the track to nowhere, like I said, boobs flopping in the breeze. You mean, I don’t get to cover up? No.
My standing blood pressure at the start of the test was 120/80. The big number is systolic pressure; that’s when the heart is contracting, pushing blood through the arteries. The smaller number is the diastolic pressure; that’s when the heart is relaxing and opening. My peak systolic pressure during exercise was 160. In the last minute of exercise I reported blurry vision. They couldn’t hear any pressure, whether because of ambient noise or very low pressure or both, and I felt lightheaded, so I stopped. After I lay down the nurse recorded a blood pressure reading: my systolic had dropped from 160 to 70, and my diastolic was inaudible. Dr. Paulsen was impressed. He felt certain I would have a positive tilt table test.
Funny, on the final report of the exercise tolerance test, under the heading “patient profile,” they listed my activity status as “athletic.” Oh yeah, athletic. Not even in my erotic dreams.
The next day I presented myself at the electro-physiology lab, sans breakfast, for my coveted tilt table test. A tilt table test is simple: They strap you to a funky table which can pivot on an axis. When the table is tilted to an upright position, usually 70 or 80 degrees, the straps hold you up. Because your leg muscles don’t have to work, they don’t. As a consequence, they don’t help return blood to the heart as they do under normal conditions, and all the gravity-defying work is left to your heart and veins. The idea is to see what happens with your blood pressure and your heart rate. Every hospital has its own protocol, but at some point, if you haven’t passed out by minute six or ten or fifteen, whatever their protocol is, they give you a drug through intravenous infusion. Isoproterinol is, I think, an artificial version of adrenaline, and it makes your heart go very fast. Whoopee!
If that doesn’t make you pass out, you are just fine and dandy, and what are you doing there anyway? At least that’s probably what they tell you, although it may not be true. The artificial situation may make more apparent what you’re struggling with in your daily life, or it might mask it. Or it might not have anything to do with the real problem. Also you can have changes in your blood pressure or heart rate which constitute positive test findings even without loosing consciousness.
I don’t know if the two women who conducted my test were techs or nurses, but I’ll just call them nurses. At any rate, there were two of them, plus me in my hospital johnnie, in a cramped little room filled with equipment. Much preliminary fussing preceded the main business. My shy veins didn’t make insertion of the I.V. line easy. After several tries and several failures, I said I didn’t think they were going to need the I.V. anyway. I couldn’t imagine making minute seven, the protocol for this hospital, without passing out. The nurse looked at me funny and said with certainty, “Oh, you’ll need it.”
So I was strapped to the table. Thanks to a determined nurse, an I.V. tube dangled from my hand. An automatic sphygmomanometer held my left arm and a manual one my right arm. Electrodes on my chest relayed tiny signals to one of several machines clustered about. The nurses took my blood pressure and heart rate in each arm. They massaged my left carotid artery and recorded my blood pressure and heart rate, they massaged my right carotid artery and recorded my blood pressure and heart rate.
Finally, we were ready to go. Let’s do it.
My baseline blood pressure lying on the table was 133/79. That is just fine, maybe a little high on the systolic pressure for a 25-year old woman, but no big deal. My heart rate was 99, which is rather fast, when you think of it; 60-80 would a be a more normal resting heart rate. Immediately upon tilt to 80 degrees, my blood pressure was 128/84—still fine. My heart rate was 137. I said I felt slight light-headedness. Now, as I understand it, this is already an abnormal test result. An increase in heart rate of more than 30 beats per minute going from lying down to upright tilt is abnormal. But we were just getting started.
At two minutes my blood pressure had dropped to 106/56; my heart rate was 147. I said I felt light headed. Next, pressure was 70/non-palpable, heart rate 134. I said my vision was going. Then my pressure fell to 54/impalpable. Fifty-four: that’s the big number, the one that is usually over 100. I was non-responsive. Finally, they couldn’t palpate any pressure. I was unconscious. Minute three. No isoproterinol.
Going out and coming back felt instantaneous—to me. The nurse wrote in her notes that I was slowly returning. I woke to glasses completely fogged over and a left arm ready to fall off. The automatic sphygmomanometer clamped tighter and tighter seeking some sound of resistance.
Oh, I was giddy. I smiled. And I laughed. And they thought I was a little odd. It was all so funny. “I worked hard to get this test,” I explained. I had thought this was the right direction to go in, but I wasn’t going to really know until I had that positive result. I had it. No cause to feel the fool.
I said later to Dr. Paulsen that I wasn’t sure if I had actually passed out. He looked at me, another one of those funny sideways looks, and said, “Oh you were out. You were definitely out.” He also said I must have been walking around in the world with very low blood pressure. Looking at my test results now, I think I see more clearly why he thought that. With systolic pressure below 90, you’re risking unconsciousness, as I understand it. I was still speaking at 70; I was still conscious but non-responsive at 54. I didn’t actually pass out until the pressure was completely impalpable. And the provocation that got me there was slight.
Walking through the halls of cardiology, a nurse stopped me. I don’t know how she knew who I was. “Hey, I heard you had quite a test today,” she said. “Yeah, I did.” My ten minutes of fame.
Two more tests completed my cardiac work-up that summer. The stress test was actually abnormal for more than the episode of low blood pressure, and the automatic printouts said “this test is positive for coronary artery disease.” However, positive stress tests are common in women regardless of whether there’s something wrong with the heart or arteries. Images are necessary to tell for sure. So, in another, much smaller room, a technician dimmed the lights and pressed her magic wand beneath and between my ribs, to send tiny sounds into my chest and listen for their echoes.
Does everybody feel a sweet and unsettling melancholy when, for the first time, they see the image of their heart there on the dark screen? With the rise and fall of my breath, static filled the screen and cleared, revealing beneath my lungs, the persistent action of my heart, a little fast and, it seemed to me, rather more squeezy than necessary.
The doctor confirmed that my heart is hyper-dynamic, and this might contribute to my trouble. If the walls of my heart touch each other, as they can in a heart so squeezy as mine, it can trigger one of these drops in blood pressure. Or so he said.
The tech took many pictures from many angles, telling me each time to hold my breath out. And a month later, I took another turn on the treadmill so they could take pictures while my heart beat like mad. The cardiologist, present this time, intervened. I had just run to a peak heart rate of 200 beats per minute or some such, and again the tech wanted me to hold my breath each time she snapped an image. Dr. Paulsen told me to breathe as I needed to and coached the ruffled tech to watch my breath and catch the images in between. If I was more of a poet and a sage I could make something of that. Well, my heart was fine; that’s enough.
Recently, a woman posted her tilt table test results to a dysautonomia forum I dip into occasionally. She asked if others would be willing to post their results too. I didn’t put mine up, but I looked at the others. I was not prepared for what I saw, and I felt briefly queasy after looking. My test results were dramatic in comparison to most of them. And I’ve gotten much worse in the eleven years since.
Not to get too dark on you. The story to come is not all hard. But there is a lot more to tell. And, no, we have not hit bottom yet.
Even while I am writing the past, I’m still living the tale. Really I don’t know for sure where my condition is now because I have been on medication for years. The tilt table test I had was low-tech and long ago. Though it documented dysfunction, it gave no indication of the mechanisms involved. This week I saw a neurologist for the first time. I will have another tilt table test soon, complete with continuous blood pressure measurement and Doppler imaging of blood flow to the brain. Plus I will submit to other, more detailed autonomic testing and MRI imaging of my head and neck. I’m actually crazy enough to worry that I will now heal before I get a chance to thoroughly document the trouble, making me look like a histrionic hypochondriac. "We should have such trouble," my Larry says.
I find myself in that familiar position again, hoping that the tests will give us more specific information to act on, fearing that they won’t. If they don’t, I’m afraid I will be left still in the position of handing small tokens—lists of symptoms, inadequate descriptions of my daily life—across the great divide between my experience of my body and the doctors’ conception of it.
But I think, too, of the definition of hope Larry articulated recently—the willingness to live forward into uncertainty, without despair. That is what I am doing now. Yet I also know that hope can mean taking your despair by the hand and choosing to live forward into uncertainty, even with that difficult companion.
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