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Turning to family for love — and a kidney

PHILADELPHIA — Like most of us, Kathleen Barrowclough, 70, was born with only two kidneys.

So, she couldn’t save both her brother and her sister, who each needed a kidney transplant to stay alive.

“My brother said, ‘I won’t take your kidney, because Nancy is going to need it,’ ” Barrowclough recalled, and although the story is 20 years old, the retired nurse from Hockessin, Del., can’t say it without a catch in the throat.

“He refused,” she said, and then bravely made a stab at a joke about needing Kleenex.

In 1997, Nancy Pyle, now 75, received her sister’s kidney. By that time, their brother was dead of an unrelated cancer.

“My sister I consider my angel, because she has given me life, and I can never repay her,” Pyle said.

Mountains of emotion complicate the landscape of organ transplants, and Barrowclough’s family has experienced all of them. Hope, fear, sorrow, but most of all, a family loyalty remarkable even to seasoned medical professionals.

Six members of the family, along with a separate mother-and-son team, came to Jefferson Transplant Institute’s day of sharing and learning Sunday to talk about how they decided to give and receive a kidney from a family member.

In all, about 40 attended the session, including staffers.

On average, 22 people die daily waiting for an organ transplant, according to UNOS, the United Network for Organ Sharing, a Virginia nonprofit that promotes organ donation. An estimated 122,000 patients need organs. Of them, 100,000 are seeking kidneys.

Survival chances improve if a friend or relative will donate. But, how do you ask? Do you ask? What if your child offers? Do you say yes? Do you turn them away?

Pyle, of Norman, Okla., stayed on dialysis for years, waiting for a donor, hoping to avoid turning to her sister, afraid that it would come back to haunt her if she and her sister fought, as sisters do.

“I was afraid to let her donate,” Pyle said. “I was afraid it wouldn’t work. What if I took her kidney and something happened? I’d be blamed for it.”

Since then, donating kidneys has become almost a family ritual, complete with donors and recipients wearing matching bracelets and exulting when the transplanted kidney works so well that they pee on the operating room table.

Generations ago, the sisters’ grandparents, Ruby and Stephen Dashiell, married a little too close on the family tree for optimum genetic health.

Related somewhat as cousins, both had polycystic kidney disease, a genetic condition in which cysts form on the kidneys and ultimately block their function, leading to death.

Because both had the condition, they passed it to their seven children and all died of it, including Barrowclough and Pyle’s father. If only one spouse has it, there’s a 50 percent chance that each offspring will be spared.

When they learned of the family scourge, Pyle decided not to research if she had it “because you couldn’t get health insurance if you had a pre-existing condition [then].”

Eventually, she learned she had it and had passed it on to one of her two daughters, Melanie Darrow. Her other daughter, Stephanie Chissoe, 48, of Washington state, donated a kidney to her sister.

“I always knew this is what I wanted to do. I felt honored that I could do my part,” Chissoe said. “It takes a village and we can all do this to help each other.

“We never felt any pressure. We had to force our kidneys on my sister,” she said, laughing.

In the family of three, Barrowclough was the only sibling to escape the condition, which meant her children did, as well.

Her children, daughters Lou Montgomery and Lori Hoffman, each with two healthy kidneys, donated one kidney to a cousin.

Montgomery, 46, of Newark, Del., donated hers to Darrow, when the kidney from Chissoe failed.

Hoffman, 45, of New Castle, Del., donated hers to Debra Warner, 55, of Newark, in a complicated switch.

Warner’s and Hoffman’s blood types weren’t compatible, so Hoffman donated her kidney to a woman and her husband donated his kidney to Warner.

As Warner got sicker and sicker, she hid her condition from her family, even knowing her cousin Lori would be willing to help. “I didn’t want to put that on her,” Warner said.

Warner is the daughter of Barrowclough’s brother — the one who died.

“I felt some satisfaction that my daughter could help Deb, because I couldn’t help my brother,” Barrowclough said, her voice again catching. “But if I weren’t able to give Nan my kidney, she wouldn’t be here today.”

Their family has had decades to work it out, so much so that organ donation is an expectation, as regular as lamb at Easter.

But kidney disease smacked the Thompson family in the face 11 years ago when their 17-year-old son, Tim, ballooned 20 pounds in 24 hours as his kidneys went into failure.

Parents Tim and Karen Thompson, of Cherry Hill, both had health issues, but they shopped hospitals until they found one, Jefferson, willing to accept Karen Thompson’s kidney. The transplant occurred in September, and Thompson said she has never felt better.

“I came in here fighting for his life,” she said, “and no one was going to tell me ‘No.’ If I had six kidneys, I’d give them all.”

She’s not a hero, she said, just a mother, but in giving her kidney to him, she took him off the waiting list and let someone else move ahead.

In 2015, 30,973 organ transplants were performed, and of them, about 5,000 came from a living donor.

Kidneys from living donors last longer and work more quickly, doctors at Sunday’s event said. The operation is relatively painless, with most patients released in two days. Recuperation takes a month and costs are typically covered by the recipient’s insurance.

The doctors and other staffers suggested asking for kidneys on social media, making the request more general to avoid pressuring anyone. Family members can act as donor champions, asking others to donate to spare the recipient an awkward conversation.

On Sunday, everyone was careful about not putting pressure to donate on anyone who might have been on the fence.

Not Tim Thompson, now 28, who lives to play golf.

“If you have a chance to do it, don’t be afraid,” he said. “You are saving someone’s life.”

Joseph McMillian, 66, of West Oak Lane, didn’t hang around for the questions. A former carpenter, he’s been on dialysis for four years. Early on, he mustered the courage to ask his son to give him a kidney.

But, he said, his son turned him down flat and refused to learn about it.

“I wish I had never asked him,” McMillian said, because his son’s refusal to even consider the option hurt him to the quick and changed their relationship. They haven’t been in touch.

McMillian marveled at the closeness of the panel families.

Maybe, before his health degenerates completely, a donor will come through, he said.

Meanwhile, he said, as he walked to the bus, he can’t afford to lose hope.

“Hope,” he said. “That’s all I’ve got.”