Kidney donors run short for this family

[Clark]

http://www.telegram.com/article/20110614/COLUMN01/106149951

Kidney donors run short for this family
Dianne Williamson
dwilliamson@telegram.com


Three decades ago, Gertrude Robert watched her 61-year-old husband die of a kidney disease. As hard as it was, what she’s watching now is even worse, she said.

Four of her five adult children suffer from the same affliction that claimed her husband. One of them, Paula Robert Bushey, is in desperate need of a transplant.

“I went through it with my husband, but it’s worse seeing my own children go through it,” said Mrs. Robert. Sadly, the odds are good that some of Mrs. Robert’s 16 grandchildren will go through it, too.

It’s called polycystic kidney disease, and it’s passed from one generation to the next by an affected parent. Each child of someone with PKD has a 50 percent chance of inheriting the incurable disease, which causes fluid-filled cysts to grow and multiply on the kidneys. Most of the 600,000 Americans afflicted with PKD eventually suffer kidney failure, and must undergo either dialysis or a transplant.

PKD has hit the close-knit Robert clan from Newton Square particularly hard. When I first wrote about them in 2006, Eric Robert, the eldest, had received a kidney from his brother, Luke, the only sibling free of the disease. The transplant was a success and Eric is doing great.

Now that Paula needs a kidney, it’s not so simple. The married mother of four has a high antibody level — 98 out of 100 — which means that the odds of finding a suitable donor match aren’t good, while the odds of a transplant rejection are high. She’s been trying to find a match for more than a year, and is scheduled to start dialysis next month.

“It’s been pretty rough,” said Paula, 47, who lives with her family on Commodore Road. “It’s tough to think about your mortality, especially when it’s beyond your control. It’s hard to cope with. I’ve never had my head in the sand about this disease. You know what’s coming down the pike. But I always assumed I’d get a transplant like Eric.”

Despite improvements in dialysis technology, transplants remain the preferred treatment, with better long-term outcomes and quality of life. For that reason, Paula and the Robert family have written letters to friends, relatives, former classmates and co-workers, asking that they be tested as a potential kidney donor for Paula. Many have stepped up; none has matched.

“I have to go out and ask people, which is really uncomfortable,” Paula said. “I know it’s asking a lot. But I’m fighting for my life. And I’ve been fantastically blessed with so many people who have offered to do this.”

To give you an idea of the closeness and selflessness of the Robert family, among those tested was the husband of Paula’s sister, Martha, who also has PKD. Martha, 46, and brother Matthew, 44, experience abnormal kidney function but don’t yet need a transplant.

“Someone asked Martha, ‘But what if you need a kidney?’ ” Paula recounted. “She said, ‘I don’t need one right now. My sister does.’ ”

The family has also stepped up in other ways. Gertrude Robert, 80, is the 2011 coordinator of the Worcester Walk for PKD, founded by the family in 2006 to raise money and awareness. The walk will be held Oct. 2. Coming up on June 24, the family will hold a “PKD Party” at 6 p.m. at the Worcester Hibernian Club, 19 Temple St. The event includes food, raffles and live music. Admission is $15, with proceeds to benefit the Polycystic Kidney Foundation.

Gertrude Robert and her late husband, George, already had their children when he was diagnosed with PKD at age 40. Paula was 26 when she was diagnosed, just months before her father died, after being on dialysis for five years.

Deciding whether to have children when you have a genetic disease is obviously a personal decision. Paula said she had hoped that a cure for PKD would be found in time for her kids, but that’s not the case. They range in age from 8 through 17. Her youngest child has type 1diabetes. None has been tested for PKD.

“I don’t regret having them,” she said. “They’ve brought a lot of joy to my life. We just try to stay hopeful.”

And she pushes on to find a donor. Paula’s kidney function is down to 12 percent and she suffers increasingly from fatigue. Potential matches must have type A or O blood. Anyone interested in learning more may contact Paula Bigwood, living donor transplant coordinator at UMass Medical Center, University Campus, at (508) 334-1269.

“We want so desperately for her to find a kidney,” said Paula’s mother. “She just wants to see her children grow up — like every mother does.”