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They were my life support: My life-threatening health crisis brought out the best in my friends

When I moved into a hospital room across the country to await a second heart transplant, my 9 best friends came too


Amy Silverstein
June 24, 2017 11:30PM (UTC)
Copyright © 2017 by Amy Silverstein. From the forthcoming book "My Glory Was I Had Such Friends: A Memoir," by Amy Silverstein, to be published by Harper Wave, a division of HarperCollins Publishers. Printed by permission.

We hear someone push open the door with a “Morning, morning.” It’s Dr. Kobashigawa. “Hello, hello.” He shakes my hand, then Joy’s. “I think I’ll take a seat before examining you, if that’s all right.” He asks me how my night was, and I tell him I woke with a terrible period.

“It’s bringing so much extra pain,” I say, hugging my thighs to my chest for a few seconds before breathlessness forces me to let them go.

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“Can she take, maybe, just one Advil?” Joy asks.

Dr. Kobashigawa flashes his warm smile. “Oh nooo. That would be very dangerous for her kidneys.”

I figure I’ll try to get by with some Tylenol. But the pain is coming in waves now, sharper and deeper with each one. I can feel my pajama bottoms sopping with blood, and the thought is nauseating. I start to hope this will be one of Dr. K’s shorter morning visits.

“I have some good news about your status on the waiting list,” he says. “We’ve been granted an exception for your case, and this makes you a 1A-E as of yesterday. Let me explain . . .”

I try to focus on his words, but the seizing pain distracts me, and I’m not sure how long I can sit and listen.

He tells us that it was necessary to submit paperwork justifying my 1A-E status (1A is the highest urgency, and E is for an Exception) because the particular manifestations of heart failure from which I suffer, as well as the type of life-sustaining care I’m receiving at Cedars, do not fall squarely within the requirements for this top waiting list tier. Even though my vasculopathy is clearly end-stage and irreparable, the diagnostic snapshot of my heart function (a conglomerate of specific test results, including pressure measurements in the right heart and assessment of the pumping capacity of the left ventricle) does not reflect the severity of my extensive artery disease. “And of course you don’t have a Swan in your neck, which is a requirement for 1A,” Dr. Kobashigawa adds, “another reason why we needed to get you an exception.”

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He means Swan-Ganz, a catheter named after the two doctors who invented it (one of them at Cedars) back in 1970. Externally, the device looks like a plastic tube attached to the side of the neck and curled at the top like a memorial ribbon. Beneath the surface, it runs through the jugular vein and into the heart, where cardiac-sustaining medications can be delivered directly and their effects monitored.

“Most of the patients on this floor have a Swan in place,” he explains to Joy. “But Amy’s condition cannot tolerate the dobutamine that would be administered through it.”

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“Revs up the heart like a race car. Keeps it beating,” I explain. “Although a few cc’s of dobutamine would actually kill me.”

Dr. Kobashigawa closes his eyes and grins. “You don’t mince words. And once again, you are correct.”

Another sharp pain grips my pelvis. I feel a gush of blood between my legs.

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Oh, crap, I’m going to vomit . . .

“And so, the 1A-E. You’re at the top of the list now.”

Joy brings her hands together in a single clap. “Fantastic! Brilliant!” He holds up a hand to caution us. “The 1As who’ve accumulated longer waiting time will have priority,” he says. “And then of course we need an antibody match—that’s tricky, but I’m going to stay optimistic.” He gets up from his chair and steps forward to examine me.

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Hold it together, Amy. Don’t puke on the guy. Think saltine crackers . . . saltine crackers . . . ginger ale . . .

The stethoscope lands first on my back. “Breathe . . . and again . . .” he instructs. He turns my chin to the left and assesses the throbbing purple vein in my neck. “Never fails to amaze,” he says.

“Yeah.” I’ve broken into a sweat. Just a few more seconds while he listens to my heart . . .

Stethoscope to chest now. Pause, pause, pause. “All right. I will see you, then, tomor—”

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“I’m sorry, but I have to throw up!” I lurch forward and he jumps out of the way with a “Whoop!” and heads for the door, promising to get the nurse.

I rush to the bathroom, drop to my knees, and begin heaving.

Within seconds, Joy is kneeling alongside me. She puts her hand on my back while I vomit again and again. When I finish, she grips my arm and helps me to standing, fills a cup with water and steadies me while I rinse. Again, I feel a surge of blood; this time it runs down the inside of my legs, all the way to the floor. “Oh God, I gotta sit down . . .” Joy helps me turn around and sit down on the toilet. She notices that my pajama bottoms are soaked with purplish-red blood; I look down at the mess and start to weep as another wave of pain cuts through my lower abdomen. “I need to . . . get these pants off, but I . . . I’m going to throw up again . . .”

Suddenly there’s a basin in front of me; Joy spotted it on a high shelf and landed it on my lap in seconds. She is everywhere at once—an octopus woman with eight arms in motion. “But my pants . . . the blood,” I moan, just before another heave.

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Her hand returns to my back. “We’ll get you cleaned up in a minute.

Don’t worry.” She rubs and rubs in gentle circles. “Shhh . . .”

Soon, the cramping and nausea begin to calm. “I think that’s it,” I say. She lifts the basin promptly from my lap. “I’m going to put this just outside the bathroom until I figure out what to do with it,” she says, and I watch her bend to place it just beyond the door frame. She pops up and whirls to face me. “Now, those pajama pants . . .”

Joy kneels in front of me. I try to place my thumbs under my pajama-bottom waistband, but I’m weak and shaking. She takes over at once, sliding the saturated flannel past my knees and feet. I look down and see that my blood-soaked underwear still clings midthigh, but I’ve got my hands on either side of the toilet seat now and I feel I may collapse if I lift them. “I can’t . . .” I whimper.

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“I’m on it,” she assures me, and sets to removing my underwear in a succession of small, sticky tugs. She tosses it along with the pajama pants into the shower stall, then steps quickly over to the sink. Soon, she’s standing in front of me with a wet towel. “It’s warm,” she says. “Want to clean up down there?”

I glance at my blood-smeared thighs; I desperately want to clean them, but my body is still weak and trembling. This violent menstrual period is a new challenge that has rendered me immediately helpless, but I find myself easing into the hands that care for me. With the seamless presence of loving friends week after week, ceding some of my independence is starting to feel like an act of gratitude.

I don’t even reach for the towel. “I . . . I don’t know if I can.” Her response is instantaneous: “Let me help.” I accept gladly.

It was only two months ago that I scoffed at Joy’s offer to sleep in my bedroom back in New York. But now here I am in California, unfathomably exposed, and I’ve invited this same friend to lay eyes and hands on a most private part of me, tending to the task of cleaning my bottom half with the gentle thoroughness of a mother.

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She tosses the used towel onto the shower floor and heads to the closet for some fresh clothes. “I don’t need a shirt, this one’s clean,” I call out.

“You need a shirt. Change up your outfit, change the mood of the day.” She steadies me as I stand up to slip on the clothes. “Period from hell, be gone!” she commands.

And why not? Joy’s intentions wield power here. For the past four days, I’ve watched them transform every corner of my hospital room, setting some of the horror back on its heels and proving once again her credo that atmosphere matters, not only for me in the wake of blood and vomit in the bathroom, but for all who enter this setting of galloping heart disease throughout the day and night. Cedars staff have been stopping in more often and staying longer now that Joy and her décor are in place; nurses plop down in Lauren’s chair, let out a sigh, and tell us, “Ahhh, this room transports me . . . Mind if I just sit here a bit?” And by the time they leave, Joy has made a new friend for herself—and for me. Her attention is fairy dust.

I can feel its magic on me as I lie here now, reclining on the bed with a soft blanket over my legs, cleaned and cleared of the early-morning ordeal that Joy has placed tidily behind us. I reach into my drawer for my Tylenol stash, swallow two Extra Strength caplets, and begin again the day that she’s already made better for me.

“You handled that really well,” she says.

“I’d say it was you who did the handling . . . or the pretty darn disgusting multitasking, really. I’m sorry you had to see all that.”

“See what? I was in action mode. Constant movement. No time for being grossed out. I will accept no sorries. Sorry!”

“So then—what? I should just say thank you?”

“I know you would have done the same for me, you big goofball. And hey, you’ve already done wonderful things for me, if you want to start comparing.”

She brings up the breast biopsy from years ago. The pathology result turned out to be benign, but the specter of an alternative outcome shook her to the core. We had a long talk together the night before the procedure, and Joy had shed rare tears of panic and dread. “What happens if I have cancer? How will I manage chemotherapy?” she wondered.

Joy reminds me now what I said in response: “You told me, ‘Then, you’ll come live with us until you’re well.’ I felt safe because I knew you meant it.” She insists I’ve provided other refuge as well, and begins to revisit the ways I’ve run reliable interference against some of the less obvious anxieties of her single life, including times I stayed on the phone with her when the cable or repair man came through the door. “Honey, what time do you think you’ll be home for dinner?” she would say as I played husband to her housewife so that the eavesdropping intruder wouldn’t know she lived alone. And there was a particular rough patch back when we were in our thirties, Joy reminds me, when she would go on a trip and couldn’t help but think, How long will it take an one to realize if I don’t make it back home again? Sending me an email with flight numbers, dates, and times gave her a feeling of security.

“None of those things involved wiping up period blood,” I point out. “I call it even,” she says. “And don’t try to tell me that I did the work in that bathroom—because it was you. You were amazing. So strong and focused—you didn’t even throw up on me! We were a great team in there.”

Great team. Amazing, strong, and focused.

That’s what Lauren said last week.

I wonder how specific the nightly emails have become. Do they now include sample statements for helpful conversation or praise? It can’t be a coincidence that Lauren and Joy are using the same words. There’s a conspiracy of lauding going on, and curiously, I don’t mind.

Over the years, my friends have learned to refrain from complimenting me on how well I abide my body ills. They’ve seen me take quick offense to pats on the back for actions, deeds, or behaviors that would not be worthy of attention in a healthy individual. But now, here’s Joy reminding me of the long history of reciprocity in our friendship and connecting me to my stronger, more giving self, and I’m uplifted by it. And when she tells me that I vomit with good aim and that, boy oh boy, can I withstand a spate of killer menstrual contractions—I’m surprised to find myself thinking, simply, Thanks for saying so. Commendable action has a new measure here in this hospital room, and so I respond to it in a new way; because the trials of my body are displayed conspicuously, I do not feel affronted by praise for how I deal with them. Instead, I feel fortunate that all my girlfriends seem intent not only on pointing out the best of my daily endeavors, but also on ensuring that the next visitor on the schedule does the same. They figured out—even before I did—that this is what I need.

Although these women arrive individually and sleep on the cot by themselves, they are linked, I now see, by a strong, supportive chain. They are never without each other in this retransplant effort, and I am never without the whole group of them, regardless of who may sit beside me on any given day.

Are we all—all of us—alone, then?

I look at the photo collage on the wall. I’m not so sure anymore.

“Now it’s time for me to go clean myself up,” Joy says, gathering her toiletry case and towel. She will go to the hallway bathroom rather than use mine here in the room, and it is by her own declaration that she (and all visitors) must do so. “You don’t need everyone’s germs,” was how she put it, proposing a Joy Amendment to the bathroom procedure a few days ago. I imagine she’s put it into writing in the group email, codifying it into law.

She steps into the hallway, and I reach into my night table drawer for the drawing pad Jody brought for me. I pull out a red colored pencil and write in large letters a quote I’d memorized back in college. Yeats. It was just one of many lines that struck me back then, but now I have an eerie feeling that I was meant to find it, to learn it, and to be alive to use it just this way.

I get out of bed and muster enough strength to push a chair up to the wall of selfies. I climb onto the seat shakily, Scotch tape in one hand and the sheet of drawing paper in the other. By the time Joy walks in, I’ve barely got enough breath to speak. “Can you . . . tell me if this . . . is the center?” I place my hand on the spot I think may be the middle. “I think so, ah . . .” She steps back from it.

“Down a bit and over to the . . . Wait! Get down from there! Let me do that, you silly!”

We switch places and I direct her. Joy presses some tape to the wall and stands motionless, staring for a few long seconds. When she turns around, her eyes are welled with tears.

“That’s perfectly beautiful,” she says.


Amy Silverstein

Amy Silverstein is an award-winning author, public speaker, and magazine writer on women’s health issues and patient advocacy. Her well-received first book, "Sick Girl," was published in three languages, won a “Books for a Better Life Award,” and was a finalist for the Border’s Original Voices Award. 

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