“I know you’re going to be OK, honey,” she says. “You won’t need this.” With that, her beeper goes off and she leaves.
“I don’t like her anymore,” Yoni says as she shuts the door.
“That’s only because she doesn’t agree with you,” I counter.
“No. That was just reckless,” he maintains huffily.
But as I settle in with my breakfast of applesauce, salt-free crackers, and plain oatmeal, I feel smug validation about the wisdom of my medical opinions.
I lie in bed thinking about the nurse’s words, and about two young women I knew with PH who died shortly after receiving lung transplants. I’m not afraid of death. I’m afraid of not living the life I’m meant to live. Singing is more than a career or lifestyle. It’s a relationship I’ve nurtured for decades; it’s my identity. Like family and faith, it is completely integrated into who I am. Destroying my voice for a chance at a life without it seems like a grievous betrayal of everything I’ve worked so hard for.
If the transplant is successful, I’ll no longer have PH, but at least with PH I have hope. I wake up each morning hoping that someone, somewhere, might find a cure. Once I have a transplant, that hope will evaporate. I’ll live out the rest of my truncated life on borrowed time, my vocal cords destroyed by surgery. Even in the unlikely event that I can sing, I fear I’ll spend the bulk of my time hiding from anything that might bring infection or rejection. Ultimately, I just don’t think a transplant will do me much good.
Around noon, Kimber arrives from DC. I’m not supposed to have “juvenile visitors,” but Kimber sneaks my twenty-month-old niece into the hospital, making me outrageously happy. Soon, my sister-in-law, Sarah, arrives as well. Yoni needs to get out of this hospital room almost more than I do, so he’s going to a baseball game with a buddy while my sisters are here. While he’s gone, we’ll pray together about the transplant listing.
Sarah sits down and I explain the situation. I mention that I think Dr. Girgis almost sees himself in a paternal role—which is fine as long as he’s not recommending overly conservative medical practices. I know that a transplant is a gift, I just don’t think it’s very well suited to me. Kimber and Sarah nod sympathetically.
Together with my sisters, I bow my head and begin to pray. I ask for reassurance that I should refuse to be listed for a transplant. Immediately, I feel a pit in my stomach.
When we finish our prayer, I open my scriptures. They read:
O ye wicked and perverse generation, how have ye forgotten the tradition of your fathers; yea, how soon ye have forgotten the commandments of God . . .
Have ye forgotten so soon how many times [The Lord] delivered our fathers out of the hands of their enemies, and preserved them from being destroyed . . .
Yea, and if it had not been for his matchless power, and his mercy, and his long-suffering . . . we should unavoidably have been cut off from the face of the earth . . .
Repent, or he will utterly destroy you from off the face of the earth.
—ALMA, 9:8–12, BOOK OF MORMON
The rebuke rings like the clarion’s call, reverberating through my whole body. There’s no way around it. I need to listen to my doctor’s counsel. I’ll die without a transplant, so I’ll proceed with the listing without delay. When Dr. Girgis comes in, I concede.
“You win.”
He looks up quizzically. “What do you mean?”
“I’ll go to Cleveland—as soon as it’s possible. I’ll drive with my family.”
A smile spreads across his face and his shoulders straighten, as if lightened. “You cannot drive. You’ll need a nurse. There will be a special plane for your medical transportation. You’ll leave tomorrow.”
While I think the plane is overkill, I thank him reluctantly.
He leaves, his smile still intact. “Thank you, Charity. You’re doing the right thing.”
Kimber and Sarah go home to their families. Yoni’s still at the game, leaving me alone for the first time in over a week. I call Mom.
We’ve been in a protracted debate about whether she should fly to Baltimore or stay in Denver. Now the answer is clear. At this point, the average wait for a pair of lungs is a thousand days. I know they’ve just implemented a new scoring system based on medical need, but I assume it will still be at least six months before they find a match for me. There’s no use in Mom flying to Baltimore. She can meet us in Cleveland later in the week. I’ll be there for a while anyway. I’m an adult now. I want Mom to stay at home with the little kids until my surgery is scheduled.
Since Dad’s death last year, Mom’s time is more precious than ever. She’s the only parent for my four youngest siblings. One of the most challenging aspects of having a sick child must be having healthy children. I need a lot of attention. For every hour Mom spends with me in a doctor’s office, I receive ten more—time sacrificed by my brothers and sisters.
Facing the reality of a sibling’s death is hard. I know that well enough. I think back to Lincoln’s death. We loved him perfectly because he was perfect. I am not. My siblings see me with all of my flaws. They see my pettiness, my vanity, my self-righteousness, and hypocrisy. So much love is thrown my way, but too often, my siblings are lost in the morass of disease. They’re expected to show perfect love toward me, regardless of the havoc my disease wreaks on their lives.
“But, Charity, if something goes wrong, there isn’t any more capable advocate for you than me,” Mom argues. Her points are as valid as my own.
“I know. But I don’t need an advocate yet,” I insist, shifting the conversation to other important, unresolved business. “Mom, I know this seems like odd timing, but I need to break up with Yoni.”
“Why would you do that?” Mom asks.
“He doesn’t need this,” I insist.
Mom’s quiet for a moment. “Honey, I know that you have questions about Yoni. I don’t know if you two will end up together. But you’re his girlfriend, not his mother. He’s an adult. Don’t act like you’re doing him a favor by breaking up with him. He can choose whom he wants to marry and whom he wants to make a life with, just like you can.” She continues, “I am sure there are other people who could have been wonderful in a situation like this, but he loves you and he makes you happy. If you find someone who makes you happier, then we can have this discussion. But has that happened yet?”
“But, Mom, love is doing what’s best for both people. Especially with everything that is going on, I think it’s best to end this relationship now,” I say emphatically.
“You do whatever you need to do,” says Mom, “but I have a feeling if you decide to end this now, you’ll regret it deeply.”
A nurse comes in to take blood and I say goodbye to Mom. Maybe this whole medical drama is about this relationship and my unwillingness to accept romantic love as a valid life course. My declining health has all but stopped my career. Maybe, just maybe, this mess can save me from myself. I always have a life plan and God always has another plan for me. And here I am, facing the most serious decision of my life with Yoni as my hospital roommate.
Yoni returns that evening. I know he hasn’t slept much, but he finally looks rested. “Honey,” I say, “I’m going to Cleveland.”
He wraps his arms around me and kisses my head. “I’m so proud of you.” He really does seem so happy.
I, on the other hand, still have serious doubts. But maybe it won’t be so bad. We have time. I like Cleveland. There’s a good voice teacher in town. I have friends there from my debut at Severance Hall a few years back. I’ll paint. Maybe I’ll work with the symphony again. Even if it’s not a thousand days, it will be a long time before we find a match. I know that much. In that time, they might even find a cure for PH!
Yoni climbs into bed and puts his arm around me. Then he opens the newspaper to a story that has nothing to do with the challenges we face. The moment is as perfect as possible. I can’t believe that I’d considered ending our relationship. Hopefully, I won’t need a tr
ansplant. But as I drift off to sleep, I’m pretty sure I need Yoni.
“Wake up!” Yoni nearly shouts, shaking me by the shoulder.
What’s wrong this time? It’s still dark outside and morning hasn’t yet arrived. I suspect another problem with my blood pressure.
“Charity, you have to wake up!” Yoni repeats. “It’s a miracle!”
A cure? Is my PH gone? Yoni hands me a phone.
“Charity, this is Dr. Marie Budev at the Cleveland Clinic. We have lungs!”
ENTR’ACTE
Three surgeons stand in an operating room, loose blue scrubs wrapped in an almost translucent gossamer against a backdrop of sterile white. In the foreground, Dr. Ken McCurry, a former high school football star who has matured into the star cardiothoracic surgeon at the Cleveland Clinic and, quite possibly, the best in the world. Behind him is the program’s senior fellow, Dr. Chris Benjamin. Sleek and toned, he looks more like an Olympian than a doctor. In the back, the new fellow, Dr. James Yun, looks on. The youngest of the doctors, Yun is in his late thirties, a mop of precociously salt-and-pepper hair peeking out from underneath his surgical cap. The path to becoming a specialized surgeon is long and punishing. Often, training isn’t completed until well into a doctor’s forties. It is a calling as much as a career.
On the table before the three lies a body. Female. Twenty-six years old. Bilateral lung transplant. The doctors don’t know much else about her—she’d said something about saving her voice as they were rolling her into the OR—but she is their patient, and that’s enough.
“Ten milligrams propofol,” orders the anesthesiologist. Administering the medication one milligram at a time, he stops as the patient’s blood pressure goes into a nosedive. “What the—” Desperately he adjusts the meds and the drip, but the numbers are in free fall.
One alarm sounds. Another. Soon, a chorus of beeps, bells, sirens, and buzzes mark this great and terrible moment of mortality. The line on the heart monitor goes flat. “No blood pressure. No pulse,” announces the nurse, an urgent matter-of-factness forcing her voice.
“Paddles,” says Dr. McCurry, taking the handles from the nurse. “Starting ACLS protocol,” he announces. Shocking the pale chest one. Two. Three times. Then again: one, two, three times. The alarms silence; one after another, beeps and bells return to their regular intervals. It’s like nothing was ever wrong.
“Open her up, Benjamin,” McCurry directs, stepping away.
“Iodine,” calls Dr. Benjamin. The nurse places tongs clutching a piece of dripping ocher gauze into his hand. He draws slow, burnished strokes across the arc of the rib cage around to the side of the back, then up and over to the other side. “Scalpel.” Entering under the left armpit, he follows the curvature underneath the patient’s breasts across her chest, tracing a thin red line of entry. His hand is steady and his cuts are clean. “Oscillating saw.” The nurse hands over the live power tool, the blade vibrating so quickly it’s almost invisible. Sliding it between the incision, Dr. Benjamin grinds away at four rigid ribs that bar entry to the organs beneath them. “Rib spreaders.” He takes a medieval-looking device with two curved metal prongs from the nurse. Placing the prongs in between his incision, he opens them wide, pulling away skin, muscle, and bone to reveal a set of lungs and a faintly pumping heart beneath.
As Dr. Benjamin attaches clamps to hold the spreaders in place, Dr. McCurry steps toward the patient for a second time. Benjamin moves aside, his bloody hands now bent up at the elbows, and McCurry begins his work.
The monitor above magnifies the inner workings of the heart and lungs. Between the heart’s right atrium and ventricle, his expert eye immediately spots a complication. Instead of opening and closing tightly, the tricuspid valve is flailing its way from open to slightly less open. The seasoned surgeon knows PH patients frequently need some kind of heart surgery, but this is extreme. Watching his patient’s engorged heart struggle through every beat, McCurry knows the question is not if, but when she will crash again. He notifies the nurse, “A tricuspid valve repair is needed.” With that, an impromptu open-heart surgery begins.
With extreme precision, the surgeon tightens the tired valve. An alarm sounds.
“No blood pressure. No pulse,” calls the nurse again. McCurry takes the device, shocking the heart directly this time—one, two, three—until it begins to beat again. “We need ECMO,” he calls.
The nurse looks toward him, startled. ECMO is the final form of life support. Playing understudy to the heart and lungs, the machine cycles a patient’s blood mechanically outside the body—oxygenating it and then pumping it back into the body’s labyrinth of veins. If a single infected cell finds its way into the machine, it’s sent on a trip through the bloodstream, polluting everything it passes. Only used in the most desperate of situations, it is extremely expensive and exceptionally dangerous. ECMO can be a bridge to life or an express train to death.
“ECMO. Now,” McCurry orders again, calm, but firm.
The nurse quickly shaves the patient’s inner right thigh and douses it with iodine. Dr. Yun takes McCurry’s place at the table. A shining example of good parenting and first-generation American work ethic, Dr. Yun is known for his precision, attention to detail, and ability to process disparate pieces of information quickly. “Cannula.” A nurse hands him the metal trocar made for placing large tubes inside of arteries. With the gargantuan needle, he inserts a thick tube into the patient’s femoral vein. The nurse places another trocar in his hand and he stabs again, pushing a second tube directly into the femoral artery. The machine whooshes on and one tube fills with dark maroon blood. In a matter of seconds, the second tube ferries the newly oxygenated blood, now candy-apple red, back into the body. After securing the cannulation with long strips of gauze, the doctors return to the transplantation.
McCurry begins carving away the fascia holding the sickly lungs in place. Hours into his work, he notices the lungs beginning to swell. “Benjamin!” he calls. “Please check the acidity in the patient’s blood.” McCurry continues to sort through the pleural fibers as the lungs continue to expand.
“The patient is in cardiogenic shock,” declares Yun.
“Administer high-dose pressors and fluids,” McCurry orders. He and the fellows step back as the anesthesiologist sets up a high-dosage drip.
Blood coagulating on Dr. McCurry’s uplifted incarnadine hands, he breathes a deep sigh of concern and goes over the surgery thus far. In two hours, two vital organs have failed a total of three times. Even the best-case scenarios for this surgery involve placing the patient on nearly every form of life support available. The prophylactic antibiotics plus fluids dripping into the patient’s bloodstream will likely expedite renal failure, and if the kidneys go, blood pressure will spike—leaving dialysis as the only option to stem the intense bleeding.
As if on clue, McCurry looks down and the patient’s chest cavity pools with blood. “We need dialysis and setup for massive transfusion protocol immediately!” he orders, soaking hemorrhaging liquid away from the surgical site with handfuls of gauze.
In just a few hours, this surgery is edging its way to the top of a long and storied list. A scene flashes in his mind of a surgery from earlier in his career. It was the most challenging surgery he had ever performed and the outcome had not been good.
This time, he promises himself, history will not repeat itself.
In the thirteen and a half hours since I was wheeled into the OR, Mom, Yoni, and a gaggle of siblings have commandeered planes, trains, and cars to gather in Cleveland. Now, they’ve strewn themselves across chairs, tables, and floors in the operating suite’s waiting room—snoozing as they wait for any news of the surgery’s progress. Finally, Dr. McCurry enters.
“Charity Tillemann-Dick?” he questions, clearing his throat and startling the family awake. “Are you the family of Ms. Charity Tillemann-Dick?”
“Yes!” confirms Mom breathlessly as the rest of the kids shake themselves into consciousness. “How d
id the surgery go?! Is she awake? Can we see her?” Her hopeful inquiry is met by a pregnant pause.
“She’s alive,” the surgeon musters. “I’m very surprised she was approved for surgery, though. She was extremely sick.”
“She’s alive?” reiterates Mom, making certain fatigue isn’t responsible for that part of the news.
“Yes,” he answers tenuously.
Sensing the lack of positive messaging, Mom’s political training kicks into high gear. “We’re so grateful you are such a skilled surgeon! I know with your help, Charity is going to be amazing,” she insists. “She’ll sing and dance and run—she’s going to do all the things she never could—all because of you and her donor!”
“Mrs. Tillemann-Dick—”
“You did the impossible! You’re a miracle worker!” she exclaims as the rest of the family finally returns to waking.
The exhausted doctor cuts her off—“Mrs. Tillemann-Dick, during surgery, your daughter received more blood than was in her entire body in transfusions, which are ongoing. I performed an unexpected emergency heart surgery on her and she was placed on every form of life support available to us. Incorrect preliminary measurements necessitated we cut the new lungs down to fit inside of her frame. She is currently in a medically induced coma and has a very long road ahead of her—”
“But she’s going to be OK,” Mom manages. “She’s going to be your star patient!”
Dr. McCurry stares at her blankly for a moment. “The nurses are doing their best to clean her up for you now. They’ll get you when she’s ready.”
For the first time in recorded history, Mom is speechless.
Turning to leave, Dr. McCurry pauses to speak, softer this time. “That reminds me—her body is badly swollen and the ongoing bleeding is quite severe, so we left her chest cavity open. —Just be aware of that when you go in to see her.”
As McCurry offers this detail, he heads out the door and a thud reverberates through the room. Tomicah has fainted.
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