“H-How long will Jessie be on this dialysis?” her mother asked. Her face was ashen and pinched, and suddenly she looked much older than her fifty-five years.
“For as long as she lives,” Dr. Kowalski said quietly. “Her kidneys won’t regenerate.”
My whole life! A wave of nausea swept through Jessica.
“Three days a week you’ll come to the dialysis center and be placed on a dialysis machine. The machine takes over the function of your kidneys, cleanses your blood of wastes and toxins, adjusts your body fluids and balances blood chemicals. Unfortunately, it can’t replace the hormone that aids in making red blood cells, so we’ll have to treat your anemia with medication.”
She didn’t care about how the process worked. She only wanted to wake up from this terrible nightmare.
“Is being hooked up to this machine the only way you can help Jessie?” Jeremy asked. She held on to his hand as if it were a lifeline.
“There’s always transplantation,” the doctor said. “But finding a donor isn’t always easy. Many factors have to be weighed, but kidney transplants are our most successful area of transplantation if you become a candidate for one.”
He made it sound like an election. “Do I have a choice?” she asked.
Dr. Harris patted her arm. “Dr. Witherspoon will be better able to discuss the next phase of your treatment with you. Write down all your questions for him.” He peered down at her through steel-rimmed glasses; his eyes seemed clouded and misty. “I’m sorry, Jessica. So very, very sorry.”
When both doctors had gone, she began to cry. Her parents wept with her, holding her, soothing her as if she were once again a tiny child. Only Jeremy remained dry-eyed, but when he took her in his arms she could feel the tension in his muscles, the fierceness in his grip as he crushed her against him. “You’ll lick this thing, Jessie,” he whispered. “You will.”
“How can I? Didn’t you hear them? It’s incurable. I don’t want to be hooked up to a machine for the rest of my life. How can I have a life when I need a machine to help me live?” She sobbed until there were no more tears left in her. Jeremy continued to hold her.
Finally her father spoke. “I know this is horrible, honey, but it’s not the end of the world. You are alive. Mom and I will help you however we can. The first thing to do is read up on it. Find out all we can.”
She knew it was her father’s way. He tackled life’s problems armed with as much knowledge as possible. He’d raised her to believe that fear was the true enemy and that knowledge did much to banish fear.
“I’ll quit my job,” her mother announced. “I want to take care of you.”
In spite of her grief, Jessica felt a twinge of guilt. She didn’t want her parents sacrificing themselves on her account. “Mom, please don’t do anything drastic yet.”
“But you’ll have to go to dialysis three days a week. I can’t let you go alone.”
“I’ll drive her,” Jeremy said quietly.
“She’s our daughter,” Ruth said.
Jessica disliked having them discuss her as if she weren’t even there. “I might be able to drive myself, you know,” she said. “I’m sure if this is something that I’ll have to do the rest of my life, I’ll have to manage on my own eventually.”
The conversation stopped abruptly when Dr. Witherspoon entered the room. He was a short, balding man with expressive brown eyes. After introductions, he explained more about the different kinds of dialysis. Jessica felt a glimmer of hope when he told them that sometimes dialysis could be done at a patient’s home, on a smaller dialysis machine, and could be done at night while the patient slept.
But her hopes were dashed when he said that at first, and “for a while,” she would go to a treatment center near the McMillans’ home in Reston, Virginia, a suburb of Washington. He told her that early the next morning she’d undergo a minor surgical procedure to create a fistula under the skin of the inside of her left arm.
“I’ll join together one of your veins to one of your arteries, and in a short time the vein will enlarge and strengthen. This makes it easier to insert the two needles of the dialysis machine. In the meantime, we’ll prepare an external shunt, which does the same thing but shows more on the outside of your arm. A nurse will cap off the special tubing after each treatment and bandage your arm.”
Jessica gulped. “Do I have to have the needles stuck in me every time I go for dialysis?”
“Yes. It won’t be so bad,” he said, patting her arm. “The nurse will numb your arm before inserting the needles. Then you’ll be attached to the dialyzer, and your blood will be cleansed and pumped back into your body. The cleaning process doesn’t hurt, and while you’re being dialyzed you can read, watch TV, talk on the phone, do homework.”
“I’ll look like a freak!” Jessica didn’t like the idea one bit.
“The fistula is under the skin; no one can see it. However, it’s very important that you take good care of the site regardless of the type of access device we use. I don’t want it to become infected or have a blood clot form. Don’t worry, you’ll get plenty of information about proper care. And, of course, you’ll be going in for treatments often, and the staff will keep a watchful eye out for problems.”
“Our daughter will be all right, won’t she?” Jessica heard the edge of hysteria in her father’s voice.
“As long as she remains on dialysis, she’ll be able to lead a fairly normal life.”
Normal! Jessica almost laughed in his face.
Dr. Witherspoon must have caught her expression because he added, “As normal as possible anyway. You’re going to be bombarded with information over the next few days,” he added. “It may seem overwhelming at first. You’ll have to go on a special low-potassium diet. You’ll have to be treated for anemia, maybe high blood pressure. You run the risk of hepatitis, bone deterioration, neuropathy—that’s nerve damage.”
“You’re scaring us,” her father said.
“I want you to understand how serious your daughter’s condition is.”
Jessica felt numb with the understanding.
“You can’t miss dialysis treatments.” Dr. Witherspoon looked directly at her. “I know you’re young, and I know how devastating this news is for you. But you can’t ignore your disease, or mistreat your body. Renal failure once was an automatic death sentence. But today, with dialysis, kidney patients can have long, productive lives.”
“And a transplant? What about a transplant?” Jessica knew no machine could truly take the place of a living, working organ, so she was interested in that option.
“This hospital has one of the best transplant facilities in the country, so that is a possibility. But that path isn’t an easy one. For starters, thousands of people are waiting for kidneys. There’s a waiting list and a sophisticated system of selection.” He folded her chart, glanced at his watch and prepared to leave.
“I know you have other questions. I’ll send in some of my support staff, who will bring you literature, videotapes, books. A dietician will be in to see you too. And tomorrow morning I’ll insert that shunt. It’ll take a few days for the internal connection to strengthen before it can be used. In the meantime, we’ll begin dialysis while you’re here. You will get through this, Jessica. I promise.”
Alone in the room with her parents and Jeremy, she glanced helplessly from face to face.
“Why is this happening to me?”
No one had an answer. Her parents looked so devastated, she wasn’t sure they could drive themselves home. But the look of sheer determination on Jeremy’s face was the one that gave her strength and courage. “We’ll get through this,” he said.
She nodded. “I suppose I will.”
“And I’ll be here with you every day.”
She wanted to believe him more than anything. But she was the one who was sick, and he had a year and a half of high school ahead of him. How long before he grew tired of having a sick girlfriend? A girlfriend who would be committed
to a thrice-weekly rendezvous with a machine that kept her alive?
Chapter
3
Jeremy drove to his house much too fast. He was risking getting a speeding ticket, and if he got one his father would have a fit, but Jeremy didn’t care. He couldn’t think of anything except his beloved Jessie and the ordeal she was facing.
“It isn’t fair!” he shouted. The wind rushing through the open car windows snatched his voice away. Icy March air made his face numb, but he didn’t care about that either. He was beyond caring about his own physical comfort. All he knew was that Jessica was sick. That she might be taken away from him. The way Tom had been.
He came to a screeching halt in the driveway of the Tudor-style brick house in an upscale Reston neighborhood, bolted from the car and ran inside. He was late for dinner. His parents were sitting in the dining room. It was a rare weeknight that his father was home. Startled, they looked up as Jeremy careened into the room, dragged his chair across the polished oak floor and lush oriental carpet and settled in a heap.
“Good heavens!” his father snapped. “Mind your manners. This isn’t a barn, you know.”
“What’s wrong?” his mother asked. As usual, she was the more perceptive of the two.
“Jessica’s in kidney failure.” Jeremy’s voice fairly shook with emotion. “She starts dialysis tomorrow.”
“Oh, no!” His mother rose and came to put her arm around his shoulders. “Jeremy, I’m so sorry. Tell us everything.”
Briefly he told them.
“Poor Jessie,” his mother said, glancing over to her husband, who sat tight-lipped and wordless. “And her poor parents. Is there anything we can do?”
“There’s nothing anybody can do. Nothing. But I know I want to be there for her.”
His father broke his silence. “How do you mean?”
“Once she gets on a schedule, I want to help take her for her treatments so that her mother won’t have to quit her job. I want to be around her, help any way I can.”
His parents exchanged glances. “What about your own life? Your schoolwork?” his father asked.
“How can you even ask such a dumb question?” Jeremy asked, leaping up.
“I resent your attitude—”
Jeremy’s mother interrupted. “Frank, he’s had a terrible shock. I don’t think now’s the time for the two of you to start arguing.”
Frank Travino threw up his hands. “You’re right, Marilyn.” He took a deep breath. “I am sorry about Jessica, son. Go ahead and spend as much time as you need to until she gets situated. Just don’t forget that you have a responsibility to live your own life.”
Jeremy wanted to announce that Jessica was his life, but thought better of it. “I’m going up to my room,” he said.
“Eat some dinner,” his mother urged.
“I’m not hungry.” She looked distraught, so he added, “Maybe later.”
He went up the spiral staircase to his room, where he leaned heavily against the closed door trying to sort through his emotions. His room was spacious, with a computer, bookcases, a TV and audio equipment taking up one entire wall. A weight-lifting bench stretched along another.
A bulletin board over his desk was crammed with a jumble of photos of Jessica and himself. Slowly he walked over to study the pictures. There were photos of them together out at his family’s lake home the previous summer. Pictures of them at three high-school dances, and more recent ones from Christmas. In every one, Jessica looked radiant, beautifully infused with life and exuberance.
A sob knotted his throat, but he refused to let it out. He hadn’t cried since his brother Tom’s funeral, three years earlier. Jessica was alive and under good medical care. She was going to be all right. She had to be! He picked up the phone and dialed the hospital. Jessica picked up on the third ring.
“How are you?” he asked.
“All cried out,” she told him. “They fed me supper and I can’t eat again after midnight.”
“When’s your surgery?”
“Seven in the morning.”
“I’ll be there.”
“It’s minor, Jeremy. You should go to school. Come visit in the afternoon.”
“No way.”
“You can’t keep skipping classes.”
“I’m a genius, remember?” His IQ was sky-high. He’d skipped a grade when he was younger and could have skipped another, but hadn’t wanted to start college at sixteen. He asked, “Don’t you want me there when you wake up?”
“Of course I do. It made a world of difference that you were here today when I got the bad news. My parents mean well, but they want to put me in a plastic bubble.”
He understood completely. Ever since Tom’s death, his parents had been hyperprotective of him too. And his father kept pressuring him to study and do well. He guessed he was expected to take over his brother’s life role. “I told my parents about all you’re going through, and they’re really sorry. I don’t think they’ll hassle me over any time I spend with you.”
“I—I really want you with me,” Jessica confessed.
He felt a rush of protectiveness and wished he had the power to change what was happening to her. “You saved my life, Jessie. I want to help however I can.”
When they’d first met the year before, when he was just fifteen, he’d had recurring thoughts of dying. He hadn’t been able to stop thinking about the accident that had killed his brother. Even now the memory was vivid, a kaleidoscope of crystal-clear impressions: his older brother, Tom, a new cadet at Annapolis, home for the weekend. Riding with Tom to the movie. The wet road. The long skid. Tom turning the car to take the impact of a tree on his side of the car. Tom had died instantly; thirteen-year-old Jeremy had walked away with barely a scratch.
I should have been the one to die, he thought. Jessica was the only person he’d ever told how he felt. Because he was so smart, the high school had placed him in an advanced English class, and that’s where he’d met Jessica. She was friendly, pretty and easy to talk to. It didn’t take him long to fall for her. And to explore with her his pent-up feelings about his brother’s death. They’d had long talks, far into the night when they were studying together, and slowly, haltingly, he’d opened up his heart to her.
“God doesn’t make mistakes,” she’d told him at the time. “You’ve been saved for a purpose. Maybe you should find out what it is.”
“I didn’t ‘save your life,’ ” she told him over the phone. “You just needed someone to talk to. I think you’re the most interesting guy I’ve ever met. I care about you.”
He knew she’d taken a lot of flak from her friends when she started dating a guy a year and a half younger, but she’d ignored them. He said, “I like being around you too.”
“Even if you can’t take me out to eat anymore?”
“What do you mean?”
“The dietician gave me some bad news.”
“Tell me.”
“The diet is the pits. No bananas. No orange juice. And my love affair with potatoes is all but over.”
“No potatoes either?” He knew how much she loved french fries and potato chips.
“I have to watch everything I put into my mouth—even water has to be monitored. I don’t see how I can live this way.”
He heard a catch in her voice and longed to reach through the phone and hold her. “Okay, so you have to juggle your diet. We’ll do it. And if you can’t eat certain stuff, then I won’t either.”
“You can’t do that.”
“Says who? I can eat whatever I want.”
“Because I don’t want you to,” Jessica said. “I don’t want your life to get turned upside down too.”
“All right—then I won’t eat your favorite foods in front of you.” He desperately wanted to make her laugh. “And if we get served something you can’t eat, I’ll stuff it in my socks right there at the table.”
“My hero.”
He heard the hint of a smile. “Remember the long
talks we used to have? When I was still so messed up about Tom?”
“I remember.”
“You told me that no matter how bad things got in life, if I’d just wait them out, life would get better again. It was hard to believe. But you were right, Jessie. Things have gotten better again, even though Tom’s not ever coming home.”
“I hate it when you give me back my own advice,” she said with a sigh. “Even when I know you’re right. I know it could be so much worse.… I could need a new heart, or liver. There are no machines to fill in for those organs. I just don’t like the whole idea. It’s scary. To be hooked to a machine for … for maybe the rest of my life. What kind of life is that, Jeremy?”
He couldn’t answer her because he thought the idea appalling also. “You’ll make it,” he said fiercely. “You have to.”
“Why? What makes me different from the thousands of people already in dialysis?”
“Because I love you. And I won’t lose you, Jessie. I won’t.”
Chapter
4
Jessica stared glumly at the tube snaking from the inside of her forearm resting on the recliner-style chair to the machine next to her. The compact dialyzer hummed, doing the work of her now-defunct kidneys. It cleansed her blood of wastes and toxins and returned it to her body purified and ready to begin the cycle of cellular waste removal all over again. She had been on dialysis for seven weeks now—three times a week, four hours a day. And she hated it.
“You look sad, Jessica.”
The nurse’s statement intruded on Jessica’s dark thoughts. She sighed. “Do you realize that I see more of this machine than I do my friends and family?”
The nurse, Pat, pulled up a stool next to Jessica’s recliner. “I know how limiting this can be for a girl your age. Most people who come here are elderly or diabetic.”
The dialysis unit was a large room with about twenty recliners and dialysis machines. Nurses and social workers made their way down the aisles, visiting with patients, checking lines and medication flows, attending to those unable to leave the confines of the chair during the dialysis process. TV sets were suspended from the ceilings, and most people watched the afternoon soap operas and game shows. Jessica was the only person under the age of fifty, and she felt like a freak and a foreigner.