Taylor's Gift (5 page)

In January of 2009, Patricia ended up in the hospital yet again, this time with pericarditis—an inflammation of the sac that surrounds the heart. It was more painful than childbirth, and it was the last straw in her ongoing battle to live. Though she would do anything to save her boys from experiencing what she'd experienced—the death of a parent—Patricia was ready to die.

A few days after being released from the hospital, Patricia got a call from Dr. Copeland's office. The transplant coordinator wanted to know what was going on and why she hadn't been in for her regular evaluations—a necessary condition to remain on the list.
Patricia explained how the other doctor had taken her off the list and how she'd given up hope. The coordinator was alarmed and set up an appointment for Patricia to come in immediately.

In the office, Dr. Copeland quickly put her back on the list. Because she was reinstated as a B1, he told her to expect a new heart in about three months. With renewed hope, Patricia did everything she could to fight for life. She wanted to be the best mom she could while waiting for the phone call. Patricia and Joe also promised the boys that as soon as Mommy got her new heart, they'd all go to Disneyland.

The call came at 2:00 a.m. Patricia and Joe woke up the boys and told them to get dressed. “Do you know where we're going?” Patricia asked.

“To get your new heart!” Sam said.

“Yeah, we're going to Disney!” Jack added.

After dropping the boys off at his parents' house, Joe dropped Patricia at the hospital door. But by the time he parked the car and walked up to Patricia's room, she was ready to leave. “The heart was infected. They want to wait for another one.”

Sadly, they picked up the boys and went to IHOP for breakfast. Two tired and disappointed boys cried. Patricia wanted to cry too.

Getting a call means that the patient is at the top of the list, so Patricia and Joe weren't surprised when a few days later, at dinnertime, they got another call. But they hadn't even left the driveway when the doctor called them again and said, “This heart wasn't good enough. We need to wait for the perfect heart.”

The boys got ice cream instead of Disney. The date was August 4, 2009.

Patricia spent most of Christmas Day 2009 in bed. It was hard to breathe and her energy was spent. She listened to the boys
downstairs, playing around the Christmas tree that she'd been too tired to help decorate. It had been
four months
and there hadn't been another call. That's when Patricia decided to give up—in a totally different way.

It had taken time, but Patricia finally realized she wasn't the one in charge, and now she wanted to give control back to the One who was.
It's yours, Lord. I can't control this. It's your timing, not mine.
As she prayed, her body relaxed and she felt a burden lift from her heart.

She had always hoped that the perfect heart was out there. But now, instead of thinking about how she would receive this new heart, she started to think about the person who would be giving it. She began praying for her future donor and her donor's family. In her mind, she saw her donor as a twentysomething young woman. Maybe God needed that perfect heart to spend Christmas with
her
family. Patricia prayed the young woman didn't have children and that she was with her loved ones that Christmas Day.

She finished her prayer for the donor's family by asking for peace for them, regardless of what was happening at the moment or what was going to happen in the future.

She prayed the same prayer for her own family.

J
ONATHAN
F
INGER
C
OLORADO

Alone in his bed, listening to the rhythms of the hospital and the hum of the nurses' conversations outside his door, Jonathan stared death in the face and wondered if he should back down. His doctors were waiting for a decision, but it was his choice to make: dialysis or death. Jonathan had spent the last two years fighting, and he was exhausted. Hopeless, really. At twenty-two, he wondered if a lifetime of fighting was a life worth living. If he decided to forgo the dialysis, it would end. But questions remained. Was refusing dialysis taking the easy way out? Was it a sin to want to stop fighting and just give up on life? Would he be committing suicide?

He thought about the questions a lot. As a believer, he knew there was a great adventure waiting for him on the other side. It was, he believed, a place where he would receive grace, rest, and health. And it wasn't like he
wanted
to kill himself; he just wasn't sure he wanted to prolong the inevitable anymore. Jonathan didn't feel good, and he didn't feel good about himself. His failed kidney transplant, as evidenced by his high creatinine level, was the cause of
his physical discomfort. The fact he hadn't taken care of the kidney he'd received less than two years earlier caused the emotional pain.

Jonathan was thoughtful, analytical, and sensitive. He didn't want to make a rash decision one way or the other without considering all the alternatives and consequences of his choice. So despite the fluid buildup in his body and his overall weakened state, he fought through the mental fog and contemplated what he should do.

A knock interrupted his thoughts. He glanced up to see a priest from his parents' church.

“Hello, Jonathan,” Father Seraphim said.

Priests from his parents' church often came to visit him when he was in the hospital. They occasionally made Jonathan feel awkward as they prayed over him, read from their service books, or performed other rituals that were unfamiliar to him. Despite his uncertainty about another priest visiting, Jonathan offered him a chair.

Father Seraphim pulled it up next to Jonathan's bed, and Jonathan was quickly relieved to see he was less about the rituals and more about the conversation. The priest asked questions about Jonathan's medical condition and talked about Jonathan's family and his own. As they conversed, Jonathan became more comfortable. So when the father asked if he had any concerns, Jonathan knew it was his opportunity to talk about what was on his mind.

“I'm struggling with whether I should go on dialysis or not, and I only have until tomorrow morning to decide.”

“What's the struggle?”

“I don't think I really want to, but I'm not sure it's okay to say that.” The priest nodded knowingly, and Jonathan continued. “I feel guilty. I'm not sure, as a Christian, or even as a person, that it's okay for me to throw in the towel and say I'm finished. I'm only twenty-two. Can I really say I've had enough and I don't want to fight anymore? Is this even my decision to make?”

Saying aloud what so far he'd only thought frightened Jonathan, and he searched the priest's bearded face for a reaction. But Father Seraphim's knitted brow revealed only his concern.

“It is your decision to make. And it's not suicide to forsake dialysis,” he said. “You're not ending your life; you're just allowing nature to take its course.”

Jonathan found his response comforting.

The priest continued, “Of course, if you ask for my personal opinion, I'd hope you'd choose dialysis; you've fought valiantly to get here. But it's okay if you want to go home.”

Listening to the priest's words helped Jonathan remove the guilt from his decision. That allowed him to look at both options clearly. The priest was right; Jonathan had fought hard to get to this point. Thinking of himself as a fighter helped give him a new perspective on what he wanted to do next.

Jonathan was in elementary school when a nasty bike wreck tossed him into the air; he hit the pavement with a sickening thud and then skidded across the rough concrete. The results were as expected—scrapes on his arms and legs and a few bruises. Everyone thought he was fine, until some unexpected symptoms emerged—the most concerning was his coffee-colored urine.

His parents took him to the doctor, and tests revealed that the discoloration was caused by blood. “Don't worry,” the doctor advised. “He probably just got hit in the kidney when he fell. This happens to boxers and professional fighters all the time.” But the doctor also advised Jonathan to come back if his symptoms persisted. It could be a sign of something more serious.

For the next several years, around Christmas, Jonathan seemed to come down with an upper respiratory infection and a fever. Oddly, the coffee-colored urine would also return. But the symptoms always went away. Doctors began to suspect something was wrong, and they performed some additional tests.

“We think you may have IgA nephropathy,” the doctor said when the results came in. He explained how the disease impedes the kidneys' ability to filter waste, which is why it appears discolored.
For IgA patients, this frequently happens when they are fighting off an upper respiratory infection. He went on to explain that for 80 percent of patients with the disease, it wouldn't cause severe problems, but the other 20 percent would find themselves with end-stage renal failure. “The only way to know for sure is to do a biopsy.”

“But he's only twelve and he feels all right. Does he really need that?” Jonathan's mother asked.

“I don't think it's necessary. His blood work is normal, and he doesn't show any loss of kidney function, so just continue what you've been doing. But you should try to stay on top of it and have his blood checked once a year.”

For the first few years, Jonathan had lab work regularly. But the results showed he was fine. Over time, the lab work became less frequent. By the time Jonathan was in his late teens, a few years had gone by since he'd last had it checked.

Jonathan's family owned and operated one of the premier retail piano stores in the United States. After graduating from high school, Jonathan followed in his father's footsteps and became a piano technician. By the time he was twenty, he was ready for the next step—a yearlong apprenticeship at the piano factory in Germany.

Just weeks before he was supposed to leave, someone remembered that Jonathan hadn't had a blood test in a while. To be safe, it was decided he should have a physical and blood work done before he left.

The next day his doctor called. “You need to come in immediately. Your results came back, and you have a 45 percent loss in kidney function.”

Jonathan was terrified. He was supposed to leave for Germany in a week; instead, he found himself at Boulder Community Hospital, where further tests showed he had indeed lost functioning. He had the biopsy they'd discussed so many years before, and it confirmed the doctor's original diagnosis—IgA nephropathy.

Why is this happening to me? Why now?
he asked himself in a fruitless search for answers. He knew the diagnosis meant he would have to go on kidney replacement therapy of some kind—either dialysis or a transplant. But for now, his doctors felt it was safe for him to go to Germany as long as he saw a doctor there. Despite the whirlwind of medical activity, he left for his year in Germany.

In Germany, the air had an odd smell to it and things tasted differently than they had back home. His food preferences began to change too. Jonathan had a sweet tooth, and he'd often crave ice cream. But in Germany his sweet tooth disappeared. Now he craved salty foods. He also noticed a taste like metal, or possibly ammonia, in his mouth. His appetite decreased, he tired easily, and he was sleeping more. Jonathan attributed these changes to his new environment.

By the time Jonathan returned from Germany in February of 2000, it was obvious his kidneys had continued to deteriorate. “You don't have another year left,” his doctor said. “You're going to need a transplant before the end of the year.”

Over the next few weeks, his doctor began the workup required to find a donor and to prepare Jonathan for transplant surgery. Family members were tested, and it was determined his mom was a match. Doctors told him what a privilege it was to bypass the waiting list and just move forward. The surgery was scheduled for November.

It took almost a year after the transplant before Jonathan was on a manageable dose of steroids, returned to a fit weight, and became more emotionally and physically stable. He moved to his own place and worked as a piano technician. He was also passionate about technology, and on the side, he began building websites. As things stabilized, he went back to school to become an EMT and
had future hopes of becoming an RN and a flight nurse. Things were finally starting to look up.

But living alone, with a busy schedule, Jonathan didn't always make the best decisions. There were days he would forget to take his medications. He felt just as good, or possibly even better, on those days, so over time he became even less consistent, then noncompliant. Soon he wondered why he was taking them at all. He stopped taking the medications entirely, and he felt great. The three months that followed were amazing. He felt better than he had since before he went to Germany. His well-being validated his belief that the drugs made him feel lousy. He was right about that—but he was wrong to think he didn't need them.

In the summer of 2002 he got really sick with a fever and other symptoms. He caught what he thought was a nasty flu. As it progressed, Jonathan's mind grew foggy, and he stopped all rational thinking. He lay in bed for weeks, unable to comprehend that he should probably see someone.

One day he woke up smacking his lips, a vague sensation of metal in his mouth. Then he realized it tasted more like ammonia. That was the wake-up call he needed. With an overwhelming sense of dread, he called his nephrologist (kidney doctor) and made an appointment for that afternoon. The tests confirmed what everyone suspected: Jonathan was rejecting his mother's kidney.