A HEART BIOPSY IS A KIND OF TORTURE THAT NO PERSON SHOULD have to endure—not even once. It entails the removal of heart tissue from a patient who, most often, is not offered any sedation. A bit of local anesthetic is the most a heart biopsy patient can hope for—injected into the neck. This painkiller’s efficacy is sorely limited.
Neither heart nor patient tends to react to the biopsy procedure very well. There is something profoundly unnatural, if not entirely counterintuitive, about snipping off vital tissue from a pulsing life-giving organ. Even the healthiest of hearts is apt to buck and sputter in revolt during biopsy, breaking into arrhythmic beats as the pincer-grip end of the catheter moves in for the taking. Patients may cry out when they feel pieces of their hearts being snatched from them this way. They are likely to perceive the maneuver as a nasty yank (not the little tug that biopsy doctors promise), and the sensation is often more than just pain; heart biopsy can be experienced as an act of cruelty.
I had my first biopsy at New York Hospital as part of the “fairly routine” tests scheduled for me by Dr. Bradley. Even as my stretcher rolled into the exam room, I did not have a clear idea of what a biopsy entailed. I knew only that I was supposed to be in good hands (Dr. Bradley had selected my biopsy doctor personally) and that the results of the exam would provide important information about my heart failure. No one told me that the medical term biopsy meant excision of living tissue—heart tissue, in my case—and I didn’t think to ask. Why would I expect a routine exam to include plucking out pieces of my heart? When I lay down on the stretcher, there was no reason for me to fear the worst; I didn’t even know what the worst could possibly be. But I emerged from the exam room ninety minutes later with enough unwanted knowledge, experience, and trauma to fill my head with a dozen blood-curdling nightmares.
When Dr. Bradley came to see me in my hospital room later that day, I told him the exam had been beyond awful. He said he was sorry to hear it and offered up as consolation some words to the effect of “Well, at least it’s behind you now.” He then sought to reduce the chance of any emotional aftershocks by suggesting that my first heart biopsy would also be my last.
In fact, Dr. Bradley turned out to be wrong.
Proof of this would come down to a count that began on this biopsy day and continued for years to come. Over time, I added them up and found that I’d white-knuckled my way through nearly sixty-five heart biopsies. It had been promised to me early on by overly optimistic cardiologists that researchers would soon come up with a better way than biopsy to gather vital diagnostic information. But almost two decades later I still found myself lying on the familiar narrow table in the biopsy suite at periodic intervals, with a sterile plug stuck in my neck and a catheter threaded through it, hearing the same hollow promise that medical science was coming close—no, really close this time—to an alternative. Meanwhile, I would have to abide doctors snipping away at my life source because biopsy was the one and only test that could determine—definitively—my heart’s health. Regularly scheduled biopsies became a necessary evil for my survival; every so often one of the doctors would remind me—as I lay on the exam table—that even though biopsy was an admittedly “uncomfortable” procedure, it was a small price to pay for being alive, wasn’t it?
I wondered whether the person who first put forth that paper-thin rationalization had ever lain down for a biopsy—let alone for more than sixty of them. I asked Dr. Waller about it once, years after my first heart biopsy at New York Hospital. He’d just pulled a long catheter from my neck for the tenth time in five minutes and emptied a tiny slice of my heart muscle onto a microscope slide. I knew all too well that he would need to retrieve four usable pieces in order to complete the biopsy, but so far he’d only been able to produce one. Ten separate yanks at my heart had yielded mostly pitiful bits of scar tissue: these were the unusable samples that turned up whenever the catheter snipped at a spot in the heart where a biopsy had already been taken at some time in the past. All the years of snips and rips had turned my heart into a minefield of fibrous scarring and turned Dr. Waller’s job into a fishing expedition to locate and reel in four rare pieces of live tissue. Sometimes it would take him thirty tries to do it.
“Any doctor you know ever gone through this—had a heart biopsy himself?” I asked, the sound of my voice vibrating through the antiseptic plastic draping that lay over my face.
“Nope.”
“Don’t you think it would be a good idea if one of you guys did, just so you’d know what it’s like?”
“No, I do not. Especially not me, thank you. Now lie still, please. I’m going in again. No talking.” I felt the end of the catheter sharp against my skin as it entered my neck for the eleventh time.
“Uh-oh, sorry,” he said. “Didn’t get anything that time either.” Dr. Waller had just pulled out another useless blank.
“Tell me, dear doctor, how many times a day do you say I’m sorry?” After so many years of biopsies together, Dr. Waller and I had gotten used to ribbing each other this way.
“Before or after I go home to my wife?”
Boy, he was quick! And he got me again—managed to extract a laugh right in the middle of a heart biopsy that was going quite badly for both of us. He waited for the wave of chuckles to circulate among the eavesdropping nurses and technicians in the room and then plunged the catheter into my neck for another try.
All gaiety was on hold once again. I shut my eyes tight and bit down as hard as I could, contorting my face muscles like a weight-lifter struggling his way into a monstrous thrust overhead.
The ordeal of the heart biopsies never lessened over time. There was the physical pain involved, of course; no one likes to have a plug stuffed into her neck like a cork, not even if you were lucky enough to have two injections of local numbing medicine. But worse than the needle stings and the knife slice in my neck, which often turned my skin black-and-blue overnight, was the unnerving sensation of my heart bouncing wildly in response to the catheter invading its sacred space. It scared me. When my heart bumped around this way, it would show up on the EKG screen as a string of abnormal beats—arrhythmias—which would then prompt the biopsy nurse to call out “V!” Dr. Waller would be glad to hear it, because V meant ventricle, and once it was determined that the errant heartbeats were originating from the ventricle, he could be sure the catheter had made its way to prime biopsy territory and the plucking could begin.
During my first-ever heart biopsy at New York Hospital, the Vs felt like nothing at all; I barely noticed them. Dr. Bradley hadn’t told me that part of my diagnostic testing might involve the induction of some irregular heartbeats, so I was not watching out for strange sensations in my chest. And even if I were to feel some odd pulsations weaving in and out of my normal heartbeat, I would have reacted completely without alarm; I didn’t know that heartbeats could themselves be dangerous—even lethal. All I knew (or thought I knew) was that heart attacks were the cardiac events to be feared, and that these happened to old people—usually over-weight ones who smoked and ate too much fatty meat. I also thought, wrongly, that cardiac trouble always came in the form of a sudden crushing pain in the chest. On TV shows and in the movies, a heart attack victim would collapse to the floor, a gasping helpless soul just barely able to mumble his last words: The pain, oh, the terrible pain! But, of course, that was just the story-book version of death by heart attack; it wasn’t how things really happened.
In time, I would learn that cardiac death can come without any chest discomfort at all. It can start as a vague feeling of I’m not right, followed by a more certain feeling that something is awfully wrong, and then end in a quick, quiet, painless collapse. There was a lot more for me to fear than just prednisone, clogged arteries, and chest pain after all.
When Dr. Bradley told me that the results of one of the diagnostic tests he’d ordered—the angiogram—had shown that my arteries were completely normal, with no blockages or narrowing, I became almost giddy with relief. Whatever might be wrong with my heart, I now believed, it was not going to land me face down on the carpet, clutching my chest. No matter how sick I was, my death wouldn’t hit me suddenly in the middle of a quiet conversation or on a city bus.
My arteries were too healthy for that.
But it did bother me that Dr. Bradley didn’t seem as relieved as I was by the good news of my angiogram. He said he’d expected the results to come out fine all along, and he had only ordered the test to confirm his earliest suspicions: that the cause of my congestive heart failure had nothing to do with my arteries. Dr. Bradley still awaited the result of the biopsy because he believed that the tissue samples would tell him things he didn’t already know.
Then, just twenty-four hours after my first heart biopsy, Dr. Bradley stood at the foot of my hospital bed and set me straight. “The tissue samples indicate that you have—or you had, at some time—a virus in your heart. There is some scarring. It seems to suggest that the damage may be on the mend, but—”
“Will I have to take prednisone?” I interrupted, with a question that was, at least for me, burning and quite obvious. To Dr. Bradley, it was a dumbfounding non sequitur. He looked into my eyes for the first time since entering my hospital room, then opened his mouth yawn-wide and let his tongue hang a little, just like he’d done when my words had caught him off guard a few days earlier in his office. It was an ugly off-putting pose that Dr. Bradley would fall into from time to time in my presence, when an uncomfortable mixture of nonlinear thought and creeping disdain welled up in him.
My question had brought him back into this pose today. “What? prednisone? Oh, that again. No. No prednisone.”
Only his last two words had found their way to my ears. I couldn’t imagine hearing any better news.
“But you will have to take some other medications—not any of them steroids; don’t worry. They’re cardiac medications that will take some stress off your heart function. Your heart needs to rest and recover… and repair itself, I hope.”
There were clues in his words, but I chose to miss them. Everything that was said would remain unexamined because Dr. Bradley and I were alone in the room. No one was there to comb through his words with me so the truth could be extracted: that Dr. Bradley was not very sure of anything just yet—neither the progression of the virus in my heart nor its prognosis. The heart biopsy had not provided us with an answer; it had only made a few suggestions.
“So I had some kind of virus in my heart for some reason, and now my heart is getting better?”
“It looks that way.”
“Right. When can I go home?”
“I’d like to keep you here for a couple more days while you get started on a few different medicines. I want to see how you do on them before you leave.”
By the end of our conversation, I had pieced together a patchwork story of my test results that served me sufficiently well.
Later that day, I relayed to my parents and Scott what I’d heard Dr. Bradley say. I never knew whether any of them then went on to have a separate conversation with him as well. If they did, they never told me about it and never attempted to realign my wishful thinking with a more accurate description of the test results. To them, my diagnosis was very much a wait-and-see kind of situation anyway, so there would be no hurry to correct my take on it. If my murky understanding of the facts had allowed me to keep my head in a positive cloud as time passed, all the better. The important thing was to keep me moving forward: up and out of the hospital, back to law school, and on with my life. This would require everyone around me to shut their eyes for the time being.
I left the hospital two days after receiving this diagnosis from Dr. Bradley. At the time of my discharge, I was deemed sufficiently acclimated to all the heart medications that were running through my bloodstream for the first time. But I hardly felt used to taking them; I’d never needed to take any pill on a daily basis before, and now I had to swallow several—all cardiac related and none of them optional. I would have to be sure to take every pill every day because, I was told, each one of them was vital to my recovery.
There, I’d heard it again: that dulcet word recovery.
My heart was going to get better, all better. It was just a matter of taking some pills, and surely I could do that. I was ready to be a good patient now.
Back in my dorm some weeks later, my suite mate’s dog ate some remains of my heart medicine out of the wastebasket under my desk. I must have forgotten to close the door to my room when I left for class in the morning, because when I returned later, the basket lay on its side with all its contents splayed out. Half-chewed tissues and crumpled paper settled into wet, mushy mounds on the floor, a pill bottle ominously among them with its cover nowhere to be found. When I’d tossed the bottle in the trash the night before, it contained shavings of pills that I had made unusable by splitting them in half unsuccessfully (half doses were a necessary prescription for a small-boned lightweight like me). Now my pills were on their way to Dunkin’s stomach. Upon discovering this fearsome sight, Dunkin’s owner, Valerie, called her vet in a fit of panic. Through tears of hysteria, she begged him to tell her the truth: was her puppy within minutes of a heart attack?
The vet laughed for longer than Valerie appreciated and then asked what drug had been in the basket. What was its function?
This question was mine to answer. I quickly told Valerie the trademark name and my sense that it was supposed to be a vasodilator, or something like that. But I admitted that I didn’t understand what that term meant exactly; I didn’t really know the functions of my own heart medications.
I didn’t want to know.
Smart, savvy patients are not born; they are made—sometimes unwillingly. My education would begin with a reluctant lesson in identifying and articulating the side effects of my medications. Before I left the hospital, Dr. Bradley asked me whether the drugs I’d been taking for the previous forty-eight hours had made me feel anything. I didn’t realize he was asking specifically about side effects. As far as I knew, most medications (besides prednisone) didn’t have any effects other than their intended ones: aspirin eased headaches, antibiotics cured strep throat, and cortisone cream relieved the itch of poison ivy—there wasn’t much more to it than that. Medicines were supposed to make people better, and mine were on their way to doing just that. I was on the look out only for sensations related to my impending cure—not for unpleasant or worrisome side effects—and I imagined I felt the earliest indications of improved health even before my discharge from the hospital. The new sensation of heaviness in my arms and the general sluggishness I experienced were actually good signs, I thought, since I’d been told that my medications would allow my heart to rest and recover. It sure felt like the pills were doing a great job. My heart had already begun its restorative relaxation; I could tell. Most of my energy had been sapped in the process, but this could only mean that the medicines were giving my heart the break it needed.
Right?
I told Dr. Bradley that I thought I was feeling better. Over the next few months, I would say the same thing to my law school classmates and to Scott as well. I’d be damned if any part of my body was going to slow me down. My heart may have failed for a while—but I would not fail.
In the months after my hospitalization, there would be many opportunities to test this resolve. Once, after rushing through the rain to reach a late-day seminar on time, I arrived in the lobby of the law school building, dropped my umbrella on the floor by the entrance, and lifted my head up into complete blindness. My first instinct was not to give in to whatever was happening to me; rather than focus on my body, I focused my attention on my surroundings. I reached out for the wall and stepped in close to it, feeling embarrassed and not wanting the other students to notice that there was an emergency going on. I bent my head forward and pretended to rummage in my bag for something, but my eyes continued to see only what I could hear. Finally, little streaks of light and color began to flicker in front of me and my sight returned. I ran up the spiral staircase to the first floor and realized for the first time that my heart was dancing madly, stealing the air from my lungs. Again, I shoved my hand deep into my bag and pretended to look for something vitally important. Just as my breath came back to me, I found the all-consuming item I’d been digging for: my pen.
Some years later, after experience had infused me with all kinds of knowledge about sick hearts and the sneaky ways they show themselves, I would look back on my moment of blindness and think about what it might have been: a blood clot, a stroke. I had stood in the lobby of NYU law school and experienced a very quiet, dignified cardiac episode, all the while working hard to appear normal. And then when the episode had passed, I gritted my teeth and forged on; I had a seminar to attend, damn it.
It may have been ignorance that prevented me from putting a name on my symptoms that day, but it was my willpower that swept me up and away from the frightening mystery that stole my sight. No matter how much I had wanted to grab one of my friends in the lobby and share my terror, I would keep my hands—and my worsening illness—to myself. I was convinced it was the better way for me to go; health problems at twenty-four could be such a downer.
I realized from the earliest stages of my illness that the people around me responded better when I stayed strong and kept all the ugly details to myself. The story of my wild run down the hall from the IV nurse—I learned with shame and self-recrimination—did not win me respect and accolades. Smiles did. A positive outlook did. So did a tightly buttoned lip. My school friends loved the illusion I created on our daily walks to the law building. I could read in their faces how pleased they were to see me resume my regular law school life in spite of the diagnosis of congestive heart failure. I liked hearing all those emphatic You’re amazing! comments and the comparisons that pointed up how seamlessly I’d moved on; more than one of my classmates told me, “If I were you, I would have taken a leave of absence this semester for sure.” The thought had never occurred to me.
I fed my friends a whole lot of sunshine as my illness progressed, and they soaked it right up. No one dared question me; I looked great, I acted fine, I handed my papers in on time, and I kept the gory details of heart biopsies, angiograms, and attacks of blindness, weakness, and breathlessness to myself. Pretty soon, everyone forgot about my hospitalization and the diagnosis I’d received there.
It was even Dr. Bradley’s impression that I looked well and seemed energetic at my next checkup. My heart didn’t sound worse than it had before. But once Dr. Bradley glanced down at the markings on the EKG strip emerging through the end of the machine, he could no longer be fooled by appearances. The up-and-down black lines didn’t hold back the truth; they told the story of every scary symptom I’d kept to myself over the previous two months. My heart had grown weaker. The medicines were not helping. The virus in my heart didn’t seem to be on the mend after all.
“Let me show you something here.” Dr. Bradley took the EKG strip and laid it down on the countertop next to a nearly identical strip from my previous office visit. I slid off the exam table and came over to take a look. “See this line, the way it dips down? Last time you were here, it dipped slightly less. See?” He took a pencil and circled the corresponding line on the earlier EKG. “Just so you know—less dip is better.”
I thought the two lines looked pretty much the same, it was my first time studying an EKG up close. Before long I would become a near expert in the interpretation of my EKGs, but for now I had to rely on Dr. Bradley’s skills to provide me with an accurate—and honest—reading.
“Of course, EKG machines aren’t perfect and the change is small, so I can’t be sure of what I’m looking at here,” he said. “It might mean absolutely nothing; we’ll just have to wait and see. And besides, you have a scan coming up next month, don’t you?”
I did. Another diagnostic test—a new and different one that was considered part of my outpatient follow-up—had already been scheduled for me at an upscale private cardiac testing facility outside the hospital. Dr. Bradley assured me that the results of this exam would provide a lot more information than could be provided by an EKG strip. Meanwhile, I shouldn’t worry; he’d see me in eight weeks, and we’d put all the pieces together.
But even before I returned to Dr. Bradley’s office, the puzzle was solved. A talky technician at the cardiac testing facility prattled his way into revealing the results of my scan—in so many words—even though I hadn’t asked. He began chatting me up while inserting my IV (which I allowed him to do without protest) and then continued to engage me while injecting precise doses of radioactive isotopes and tagging substances that would reveal the strength of my heart muscle. After I was fully injected, he laid me down on the exam table, centered some kind of camera over my chest, and left me there while he went off to observe the data collection from another room.
Later, when the test was done, I walked out of the dressing area and found the technician waiting for me in the hall, ready as ever to talk.
“So, uh… how are you feeling?” he asked, leaning one shoulder against the wall.
“Good. Fine.”
“Really?” He lifted his chin in the air and peered down his nose at me with squinting eyes that could have been either flirty or challenging, depending on how you looked at them
“Yeah. Why?”
“Well, it’s just… I was thinking. What kinds of things do you do every day?”
“I go to law school. I’m in class for about six hours most days, and then I study a lot. On weekends I take a train to Philadelphia to see my boyfriend.” I paused to let the boyfriend sink in. “I’m really, really busy.”
I was almost sure this guy was trying to pick me up.
“And you’re telling me you feel fine?”
“Pretty much, yeah.” My answer came slowly and with downcast eyes; only now did I understand where this talky technician had been going with these questions. He’d just seen the results of my scan.
I moved in with the best defense I could muster: “I know things might not look great on paper, but I have to say, the medicines really do help. They make it so my heart doesn’t have to pump so hard, you know? And I can go and go all day long.…” My words hit the air with an awkward, false ring.
The technician broke into a friendly grin that said he wanted to believe what I’d just told him but didn’t. “It’s amazing that you feel so well. Those pills must be something else, huh?”
“Must be. ’Cause I feel fine. Lots of energy.”
“Well, great. Good for you. It’s hard to believe, though, I gotta say. The scan showed some pretty low heart function.”
I put aside this troubling statement, figuring I’d get a better answer a few days later at my next appointment. I joined Dr. Bradley at the countertop so that, together, we could compare my latest EKG strip with the previous ones. Even before his guiding pencil hit the page, I had already studied the latest strip unassisted and had a sense of what it revealed: the last two months had been a time of great change. Somehow the little dip had turned into a significant plunge.
Just as dramatically, I had become a much smarter patient. I’d learned how to recognize a bad EKG.