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Kidney transplant brings friends closer together

Mary Pickels
| Sunday, May 13, 2012, 4:32 a.m.

Flames flickered in the living-room fireplace of Judith O'Toole's Greensburg home, but the warmth in the room seemed to emanate from friendship.

O'Toole, director of the Westmoreland Museum of American Art, and Barbara Jones, museum curator, were back to work, six weeks after Jones donated a kidney to her supervisor and longtime friend. Their visit one recent evening included O'Toole's husband, Kevin, and Jones' partner, David Ludwig, along with the O'Tooles' daughters Sarah, 14, and Rachel, 11.

Talk centered on a renewed commitment to educating others about organ donation, particularly between unrelated donors and recipients.

O'Toole was glowing, promising her husband that the next day she was going to drive herself to work.

There was a joking reference, obviously already old, to synchronized bladders, made as the women hurried off to separate bathrooms after a long ride home from a Pittsburgh meeting.

And there was the expressed belief in guardian angels and fate, perhaps two of the elements leading O'Toole and Jones to be working side by side when O'Toole's first transplant failed.

RECUPERATION

The transplant was performed Sept. 25 at UPMC Presbyterian hospital in Pittsburgh. The women, both 49, were home within days.

O'Toole said she felt prepared for the surgery because she'd received a kidney transplant three years ago with an organ harvested from a donor who had died. Although that cadaver kidney never functioned optimally, it bought her a few good years.

Last summer O'Toole had a double nephrectomy, in which both of her own kidneys were removed. During a kidney transplant, she explained, it's common to leave the original organs intact, as they may still have some residual function. Removing them is very complicated surgery, she said, so if they are not creating any problems they usually are left in place.

In O'Toole's case, however, polycystic kidney disease had led to growths that covered the original organs. She'd been hospitalized several times with pain and bleeding from the cysts. Each hospital admission lasted five to 10 days, and eventually her doctors decided to remove her own damaged kidneys, leaving the transplanted organ in place.

"(The first transplant) was functioning marginally, so it was left in," O'Toole said. For some reason, she said, the cysts do not gravitate to transplanted organs.

In March, O'Toole began dialysis at Westmoreland Regional Hospital in Greensburg, which allowed her to continue working full time.

"It was better being on dialysis, if you can imagine," she said.

But the cadaver kidney wasn't enough. She needed a second transplant.

Family members did not match her blood type, so she also went through all of the testing and procedures to again be placed on the transplant list.

But Jones decided "enough was enough." She had offered O'Toole a kidney three years earlier and had been turned down. This time she insisted on being tested. In fact, Jones was unsure of her own blood type, so she donated at a blood drive and learned that she and O'Toole were both Type O.

"That was kind of the first step," Ludwig recalled.

"I was worried," he said, when Jones announced her plans. "But every time I asked a medical question, the answers I got were the right ones."

Jones, he knew, had made up her mind, and he was pleased to know that O'Toole would benefit.

Insurance would cover the costs.

"Once I was assured this would not have any impact on Barbara long term, the idea of having this positive impact on Judy...that was pretty exciting," Ludwig said.

Jones had cared for him after he'd had surgery, Ludwig said, and he had no qualms about assuming the caretaker role himself.

"We're pretty much in this for the long haul," he said, gazing at Jones. "When the bad times come, you take care of each other."

"It was good for me going in not knowing" how much discomfort she would experience, Jones said.

Although she was discharged within days, it took a while to overcome simple exhaustion.

"I think at first you had a 30-minute life span," Ludwig joked. "But the amount of time she spent up 'putzying' increased exponentially day to day."

"It does sort of come back rapidly," Jones said, referring to her energy level. By early November she was back to work full time, preparing for the museum's 28th annual Holiday Toy and Train Exhibition.

O'Toole understood a bit more about what to expect.

"The big difference for me is that this time I did not have complications," she said, recalling her first transplant, which didn't go as smoothly.

Her kidney function, she said, went to normal within 48 hours of surgery. The success was apparent on the operating table.

She made daily trips to the hospital for the first seven days after she left the hospital. A minor glitch with her anti-rejection medication was corrected.

But the kidney function, a biopsy showed, was fine. The two transplanted kidneys "are happily coinciding," O'Toole said.

Both women praised the hospital's staff for the care they received.

"You never for a moment felt there was something they couldn't figure out," O'Toole said. "I never worried that I was not in good hands."

Although Jones never doubted that her kidney would be a match and the surgery would be successful, O'Toole knew of people who had gotten as far as the operating table before a planned transplant was halted.

"I think we were all kind of holding our breath until the last minute," Ludwig said.

HINDSIGHT AND ANGELS

Jones sees her reward when she looks at O'Toole.

"What's so great for me is to see how well she's doing," she said.

When Jones' hairdresser asked if she would do it again, she answered honestly: "I said yes, I would do it again, but thank God I don't have to."

The only downside, she said, were the first 10 days of recovery, when she was quite uncomfortable.

Kevin O'Toole listened quietly as his wife and her friend joked about their procedures.

Despite their optimism, he was nervous before the surgery, he said.

"Having been through this before, knowing what could happen and not having had a good experience last time..." he said, his voice trailing off. "Plus being concerned about Barbara's health. I was cautiously optimistic.

"She looks healthier than she has in years," he said.

O'Toole is ebullient. Receiving an organ from a living donor made all the difference. "It's huge, it's really incredible," she said.

Before, she said, the many medications she had to take were a constant reminder of her surgery. Now she takes a smaller dose of anti-rejection medication, twice a day. She'll probably take it for the rest of her life.

"I don't feel like a kidney patient," she said.

Grinning at Jones, she added, "I'm back full time. I'm very competitive. She's back, I'm back."

In fact, when O'Toole learned that Jones had managed a walk around the block, she set out to cover the same distance.

And they found that their concerns about being away from work for so long were unfounded.

"The staff was really good" about taking over the workload, O'Toole said.

"We've had a wonderful outpouring of support," Jones added, "from flowers to food."

When they returned together for their first day back at work, the museum's docents burst into applause.

Sitting on a sofa with her daughters nearby, O'Toole discussed past family trips, including a London vacation postponed last year when her health was poor.

"Now I can go anywhere," she said, including a possible trip to Italy next summer. "When (Kevin) first suggested going away, I said, 'We can't do that.' Then I thought, 'Oh, maybe we can.'"

Older daughter Sarah remembers her mother's first transplant, and how she was in and out of the hospital the whole first year.

"We take good care of her at home," she said, rubbing her mother's shoulder. "She got dinner in bed last night."

The first time her mother fell ill, Rachel, who was then 5, made a picture of a kidney from a paper plate, expressing her wish to give her mother an organ.

Both women hope their story will encourage more people to consider organ donation.

O'Toole said she still has people tell her, "I'd give you a cup of sugar, but not my kidney."

Before their transplant, Brian Broznick, president of the Center for Organ Recovery and Education, said that unrelated kidney donations are on the rise. But even he said it was "pretty high odds" to find a match at the next desk.

"Seems like someone was looking over someone's shoulder," he said at the time.

The two friends agree.

"I think there are guardian angels out there watching," Jones said.

"And I'm beginning to believe in fate," O'Toole said.

Effort aims to bring organ donation to forefront


For the second consecutive year, corporations, unions, hospitals and trade associations throughout the region have joined the country's largest educational initiative to promote understanding of organ and tissue donation, reaching almost 1 million people.

Nearly 800 area organizations participated in this month's educational initiative, up from 345 last year. Called "Partnering For Life," the initiative is spearheaded by the Center for Organ Recovery & Education, the nonprofit agency that manages the region's organ and tissue donor program.

Through the program, participants are providing information and materials to help employees or members decide about organ and tissue donation based on facts, not misconceptions. CORE's endeavor also is serving as a model for the national workplace partnership under the direction of Secretary of Health and Human Services Tommy Thompson.

"Last year, CORE became the first in the country to coordinate a program of this magnitude," said Brian A. Broznick, CORE president and CEO. "With the support of numerous organizations, CORE will be able to move the donation message from the health care setting into the mainstream. It is CORE's intent to continue to build the program so donation eventually will become a frequent topic (of conversation) at work and home."

Nationally, 81,000 people are awaiting a life-saving organ transplant and thousands more are in need of tissue and corneal transplants. Within CORE's region — western Pennsylvania, West Virginia and a small portion of New York — 1,600 patients await organ transplants.

According to CORE, two of those people likely will be among the 16 who die each day in the United States while waiting for a donated organ.

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