Taylor's Gift (4 page)

During his recovery, doctors had “frozen” his position on the organ donation list. They hadn't removed him, but he couldn't get an organ until he healed from the accident. And recovery wasn't easy. Even after months of rehab, he could barely walk. To get up the stairs, he had to sit down and go up one at a time—backward—while Vanessa helped. But they didn't give up. Together, they got him well enough to walk on his own, to have his trachea tube removed, and to get back on active status.

By now, Jeff had been on dialysis for two years, and he didn't feel well. He'd started swelling and at times he could barely bend his arm to brush his teeth. His Wrangler jeans didn't fit any longer, and the snaps on his cowboy shirts routinely popped open. His blood sugar problems were getting worse. Dialysis wasn't enough. A kidney/pancreas transplant was the only thing that could help him, but he still hadn't gotten a call. No one was sure how much longer he could physically take it.

P
ATRICIA
W
INTERS
A
RIZONA

On July 4, 1976, while the rest of America watched fireworks bursting in national pride, six-year-old Patricia watched her father die. Patricia, her brother, and sister had just gotten out of their new pool and were drying off when someone noticed her father's body floating in the water.

“Reno,” her mother said, calling him by his nickname, “if you're kidding, I'm going to kill you!” Patricia's mother jumped in—all 120 pounds of her—and dragged him out of the water while Patricia watched. Friends and family tried to resuscitate him, but her father died of a heart attack before the ambulance arrived. All Patricia could think was,
If he's dead, how is she going to kill him?

Patricia's life quickly changed. After her father's death, her grandmother became her primary caretaker. Her mother became emotionally detached, went back to work, started dating, and got remarried. Within four years of her father's death, Patricia's family moved to Scottsdale, Arizona. It didn't take long for Patricia to become acutely aware that she'd
forgotten
more about her father than she remembered. The memories had faded, and that bothered her.

Now thirty-six, married, and lying on the couch too sick to get up, she watched her own two kids playing. If she died, would they remember her? Sadly, she already knew the answer. Sam was just six—the same age she was when her father died—but Jack was only four. If she died now, Sam's memory would fade over time and Jack might not remember her at all. It was a painful thought, one that devastated her already dysfunctional heart. She was dying and she knew it. Patricia closed her eyes, trying to squeeze back the tears, and offered her kids the only thing she had the strength to give them—a prayer.

Please, God, let them always know how hard I fought to be with them, how much I wanted to raise them, and how dearly I loved them.

Growing up, Patricia thought of herself as healthy. In high school, she was on the track team. She was strong and fast. She had a type A personality and was involved in a variety of activities. Before getting married, she worked full-time as a nurse, started work on her master's degree, ran marathons, and was active in her church. Heart problems weren't supposed to affect people like her. But genetics weren't in her favor. On her father's side, mortality seemed to hit by age forty-two. By that unimaginably young age, everyone had suddenly dropped dead from a heart attack. Her dad was the last to go. Patricia assumed that since she was so active, she was immune. She'd had her heart checked when she was young, she took care of herself, and everything seemed fine. What could go wrong?

During her first pregnancy, Patricia's heart rate occasionally shot into the two hundreds—much higher than it should have been—but it always came back down. As a labor and delivery nurse, she'd seen lots of women overreact to the changes in their bodies, and she didn't want to be one of them. Every pregnant woman had trouble
breathing; why should she be any different? But after Sam was born, some of her symptoms persisted. And then new ones emerged.

Patricia began to have episodes where she felt as if she would pass out. Her heart rate would increase and then quickly decrease. She began experiencing tunnel vision. With her history, she knew these new symptoms could be serious. Her family doctor recommended she see a cardiologist.

Her second visit to the cardiologist resulted in a diagnosis of atrial fibrillation, or an irregular heartbeat. The doctor wanted to perform an ablation to fix it and promised she'd feel better once it was done. But Patricia was pregnant again. The procedure would have to wait.

During her second pregnancy, the symptoms worsened. At work, she would be in the delivery room, working alongside a doctor, and she'd break into a sweat. Her heart would start racing, and she'd feel as if she were going to faint. One day, when assisting her OB with a delivery, it happened again.

“Are you okay?” her doctor whispered.

“I'm fine, I just don't feel well,” Patricia said.

“Has this ever happened before?”

“A few times,” Patricia said. She brushed it off as she focused on the patient.

After the patient had given birth, her doctor pulled her aside and said, “We're putting you on something to keep it from happening again.”

Patricia started on a low dose of medication. For a while it lowered her heart rate. She felt great, and was pleased when, in August of 2005, she gave birth to another healthy boy, whom they named Jack.

On the day before Thanksgiving, almost three months after giving birth to Jack, Patricia entered the hospital for the ablation. Things were going well for the young family. The boys were thriving,
and her husband's mortgage business had taken off, allowing them to buy a spacious new home in an upscale neighborhood for their expanding family. Patricia worried more about thawing the turkey than the ablation.

But on Thanksgiving Day, Patricia couldn't breathe. She was constantly short of breath, and it frightened her. She called the cardiologist and he suggested she go back on her medication. She did, but it didn't help. Over the next few days, she felt so bad she couldn't even hold baby Jack.

In the emergency room, the doctors did an echocardiogram and X-rays. These were standard tests for diagnosing heart disorders, but it was the first time they'd been done on Patricia. After looking at the results, the surprised physician asked, “Why didn't you tell us you felt this bad?”

Doctors explained how the ablation had stopped her heart from racing, but the racing had actually been helping her. Now, her heart was unable to keep up with her body's needs.

“We're going to admit you,” the doctor said. “You have a 10 percent ejection fraction, and we can't let you go home with that.”

“What does that mean?” Joe asked after the doctor left.

“I think it has something to do with the heart pumping,” Patricia said. She never liked learning about the heart because it reminded her of her family history. She called a friend, who looked it up.

“It has to do with the volume of blood flowing out of the heart. Normal is 60 percent to 70 percent,” her friend said.

“Mine's 10 percent.”

“Patricia! It says here that's not compatible with life!”

The cardiologist arrived. “We're sending you up to ICU, and we're starting you on meds, but we're not sure what will happen next. You need to get your things in order—right now,” he said.

Patricia had worked in a hospital long enough to know that was code for, “You don't have long to live.”

She was eventually diagnosed with peripartum cardiomyopathy, a serious disorder that occurs during pregnancy, which essentially
meant her heart muscle wasn't contracting forcefully enough to pump blood to her vital organs. Approximately 50 percent of women with the condition spontaneously recover with medication. Another 45 percent recover, but not fully. The remainder need a pacemaker, possibly even a transplant. Patricia was in the latter category.

In January of 2006, doctors installed an ICD that would zap her heart into rhythm whenever it started to beat erratically. Though it was meant to be used only occasionally, it was soon pacing her 100 percent of the time. Still, doctors were confident that with time her functioning would increase.

In 2008, doctors at Mayo agreed that Patricia wasn't going to recover as expected. It had been more than three years since the symptoms had started, and even with the pacemaker, her heart was still operating at a mere 10 percent.

“You're going to need a transplant, but not for another five or ten years,” her doctor told her.

Patricia wasn't happy with the news. If a transplant was the only thing that would cure her, she didn't want to wait ten years to get one. Constantly short of breath, she prayed,
God, how sick do I have to be before I can get better?

But things started to deteriorate quickly. By the summer of 2008, her condition had gotten considerably worse. Her cardiologist, Dr. Copeland, decided that Patricia needed to be put on the transplant list as a status two—meaning her name was on the list but at a lower priority. Dr. Copeland expected it would still be a year before she needed a new heart, but now she was on the list in case things got worse.

And they did.

At the beginning of September, Patricia spent most of her days lying in bed or on the couch. The boys were in daycare, and it was all she could do to pick them up from school at 4:30, feed them, and watch them until bedtime at 7:30. At best, she was a mom for
three hours a day. There was additional stress too. The economy was taking a toll on Joe's business, and with Patricia no longer working, the new house that had seemed like a reward now became a financial burden.

When she experienced another decrease in functioning, Dr. Copeland changed her status on the list to a B1, which meant she needed a heart sooner rather than later.

In the fall of 2008, Patricia was back in the hospital. Dr. Copeland was on vacation, and a new doctor saw her. “I don't see why you're on this list,” he said. “You're on the right medications; you just need to go home and stop being so anxious.” Patricia had never felt so dismissed. Not only did the doctor think she was just having anxiety, but he also took away her only hope—he removed her name from the transplant list.

Patricia fell into a dark depression. Was this somehow all in her head? Was she just an emotional woman with anxiety like the doctor said? She knew she'd been under a lot of stress, but her symptoms were very real. With no hope, what was she supposed to do?

For months, she did little more than curl up in a ball, drink, and hope to die. Friends grew worried and sent her medical records to out-of-state doctors, who confirmed her need for a transplant. But the family couldn't afford to move. Joe's business was failing, and with the housing market collapse, they were about to lose their home and their cars. Besides, Patricia was too sick to move.