Entry 2

Entry 2

Entry 2
A weeklong electronic journal.
March 9 2004 4:41 PM

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Lately, I have taken up sticking needles into my body and letting others do the same. I just did the worst shot of the week, a dose of a drug called Aranesp, which battles anemia. It is worse than the other sticks because it requires a prolonged injection of the medication—by my own hand—once I get the needle into my stomach. And it hurts. I usually yelp a little bit as I press the last bit in; Jeffrey keeps his hand on my back for reassurance. Other shots, like the insulin I am taking to counteract the blood-sugar problems caused by my high doses of prednisone, use such fine needles that they hurt less. In fact, sometimes the blood-sugar lancets, the even more minuscule sticks used to test for the sugar levels, hurt more than the insulin shots themselves. And then there are the blood draws at the hospital, every other day it seems (one today!), to make sure my antirejection medications are at the proper levels. But someone else is in charge of actually extracting the blood from me for these tests. I just kick back, point out the old bruises, and indulge the tourniquet.

Though I've been a lifelong patient, this kind of self-care is utterly new to me. Until I was discharged post-transplant, I had inhabited the Methodist Hospital for all but three weeks since Halloween. I got out for a week or so at Christmas and then just before the transplant, but in general I was in an unstable respiratory condition the likes of which I had never known—meaning total oxygen dependence and almost constantly labored breathing. I kept telling people that it was just last August when I was able to hike the small canyons around Austin, scaling rocks—not with ease, but climbing nonetheless. During the months in the hospital, I would often think about the exertion of that day—the heat on my skin, the adrenaline from seeing a not-too-small snake slither away. And during those months, I came to realize I might well never have another day like that again. I just wanted to chant, "What happened?" over and over—and some nights I did.

Grace and me, pre-transplant
Grace and me, pre-transplant
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I crashed most dramatically the day my niece, Grace, was born in November. The scenario has all the markings of a bad short story, if only it wasn't my life. I was already in the hospital for antibiotic therapy when one of my lungs catastrophically collapsed—a tension pneumothorax. I was moved to the intensive-care unit, where I was stable, and know I spoke with my only sister, Anne, while she was in labor. But sometime between that call and when Grace was born the searing pain in my chest returned; I could not breathe, and my blood-oxygen saturation dropped dramatically in a matter of minutes. It was singularly the worst feeling I have ever experienced.

For the next 10 days, I was largely unconscious, intubated, and on a ventilator. My memory of this time is murky, but I remember thinking first, that I was "famous" for something unclear to me, and second, that the way I acted in my merely semiconscious state would have some effect on the aggressiveness of care I received—meaning I had to convey that I did not want the doctors to give up. This was, by all accounts, the closest I came to dying. I am grateful that fate, at least at this juncture, was more creative than simply trading one life for another. During that time, my parents went to one hospital in Boston to meet their first grandchild and went to a second hospital in Houston to watch doctors save my life. Save it they did. As one of the specialists remarked a couple of weeks into my recovery from the vent, "You're a tough one to kill."

With Grace, wearing oxygen
With Grace, wearing oxygen

On my bathroom mirror, I still haven't removed the half-completed checklist of tasks I had to complete every day when I was just trying to stay stable in the fall. There were multiple nebulizer (inhaled mist) doses of bronchodilators to open my airways and antibiotics to fight infection. I was also supposed to get physical therapy, consisting of pounding on the chest and back, or wear a contraption called the Vest, to vibrate loose the phlegm at least twice a day. There is a box for exercise, but there are no real checks, just a couple of squiggles where I had probably failed in an attempt. I was so very fatigued. I also had "toys" to play with, breathing-challenge machines that would prompt me to cough. And of course there was a box where I would mark whether I had needed oxygen at night. All of these were checked, as I came to wear oxygen all the time, trailing a plastic cord behind me for constant flow as I wound around my apartment.

But my attempts at super-compliance just were not enough to sustain the independent-living, intellectual professional life I had cultivated. I needed help. Help! I had to plan every foray from the couch within my apartment to maximize each effort at moving around because I would become impossibly short of breath. By the time the transplant came, I feared showering because when I did my oxygen-saturation levels would drop, even if I wore the oxygen nasal tubing (the cannula) under the water spout, and I generally needed Jeffrey standing by in the bathroom in case I panicked.

While I somehow believed that I would turn a corner and get "healthy" again, I now know from my doctors that there was very little chance of that happening and that it was a matter of my staying strong enough to receive a good pair of new lungs. I don't know why I didn't comprehend this reality. There is one conversation I had back in November that plunged me into despair, when the head of the medical intensive-care unit at Methodist, Al Davies, explained to me that my diseased lungs would be too unstable for me to fly or possibly travel by any means to my wedding—still scheduled for May 15 in Portland, Maine. I told him my plan for the timing of the transplant, that I would hold on until after my wedding and see where that put me in terms of need and priority. He chuckled at my presumption that I could control these things. He said, "You're not leaving the state of Texas without a new pair of lungs in you." I told him he was wrong, thinking there was no way I needed them so soon. I knew Dr. Davies is a great thumb-wrestler, but it seems he is a great prognosticator of all things critical and clinical as well.