Saturday, August 8, 2020

Elliot Kaye needs a kidney transplant. Then the pandemic hit.

Transplant News Sharing // News from Source www.washingtonpost.com

I met Elliot years ago when he was the chairman of the U.S. Consumer Product Safety Commission, the guy who stands at lecterns issuing recalls or challenging companies in hearings when mobile phones catch fire or crib bumpers suffocate babies.

It wasn’t clear in his appearances on TV, but something was trying to kill him from the inside.

And it became clear to his doctors early this year that Elliot’s inherited kidney disease was advancing, that he needed a new kidney from a donor, living or deceased. And the timing for that ask couldn’t have been worse.

Just a couple weeks after he cleared all the protocols and made it onto the transplant list in February, the novel coronavirus pandemic hit. Transplants nationwide ground to a halt, and potential donors vanished.

“People are suffering everywhere these days, and the attention needs to stay focused on those most in need right now,” Elliot, 51, reasoned in the spring, as doctors lobbied the White House to prioritize vulnerable kidney patients and urge that transplant operations resume.

Elliot was a boy when he watched his mother suffer from polycystic kidney disease. It finally killed her when he was 26, just a few years after he learned that he has it, too.

He knew that the hereditary disease would make his kidneys swell with so many cysts, they’d grow from the size of baseballs to footballs.

He knew that it could make him chronically tired and sick with everything from high blood pressure to a brain aneurysm — and that it would probably lead to kidney failure.

As a young man, he didn’t see this as his future. He trusted science would save him.

“There was a lot of research going on at the time, a lot was happening, and I figured it eventually wouldn’t be an issue for me,” Elliot said.

His career is about finding the danger in everyday objects. But in his personal life, he’s a pragmatic optimist.

It’s what he also told his wife, Kanae Watanabe-Kaye, when they were talking about marriage. Would it be an issue later in life? Would it be something he passed on to their kids? Could they even have kids, knowing there’s a solid chance they would have the disease, too?

“When we were dating, we had conversations about this,” she said. And they both decided they would trust science, trust progress, trust love.

They had the kids — two boys. They lived their Washington lives. Elliot held off the disease with self-care and some of the newest kidney medications that bought him time.

But he’s out of time now.

I visited his family the first week in March, right after Elliot went through the protocols to join the list of kidney transplant recipients at MedStar Georgetown University Hospital.

Kanae, a World Bank powerhouse who has her own complicated, ongoing medical issues with a rare auto-inflammatory disease, was feeling well.

Their older son, Noah, had just made the Bethesda-Chevy Chase High School’s varsity baseball team — as a freshman and a catcher. (That’s a big deal, I’ve learned.)

And their younger son, 10-year-old Ethan, was killing it on the Cheetahs, a local hockey team for kids with special needs.

Noah, 15, came home from school nearly every day of his freshman year to make his own lunch, and on that day I watched him reheat the Bolognese he had made from scratch earlier in the week. We talked about medical issues, his father’s and his own.

“We learn to deal with it,” he said with a shrug. “It’s just what my life is.”

He was a sensation as a freshman ballplayer, and the coach never said anything about his odd habit of drinking tons of water, then flinging off all that catcher gear to run to the bathroom, often. He has to keep flushing those kidneys with as much water as he can handle to boost their function.

The other players and the coach also never noticed the slight bulges on the sides of his lean body. But his father recognizes them — his son’s kidneys, growing from baseballs to footballs.

The family still doesn’t know if Ethan has it, too.

That day in March, it was going to be the story of a prominent Washingtonian going through a difficult disease, hoping to find a matching donor.

Last year, President Trump signed an executive order aimed at doubling the amount of kidney transplants in America. It was looking like science — and policy — would help Elliot after all.

A week later, the pandemic shut down school, shut down baseball and hockey, and shut down their search.

“This has been the great equalizer,” Elliot said, when we reconnected this month. “When you visited us, our story was atypical.”

With 3.1 million Americans diagnosed with the coronavirus and more than 130,000 dead, what would happen to Elliot’s search?

“Who would want to go to a hospital and get tested for a match?” he worried.

And then it became clear that covid-19, the disease caused by the coronavirus, was also attacking patients’ kidneys and more people would be in line for transplants. More bad news? Maybe not.

“Covid has required the transplant process to be more flexible,” Elliot said. “So there’s remote screening, and they’re working with donors on how they get comfortable with the screening process.”

The pandemic, weirdly, may have made donation a little bit easier, as the list of recipients grows longer.

“Donors can do everything from their computer, from their home,” Kanae said. “They can go to a local place to get blood drawn.”

And donors can enter the search from anywhere in the nation. The whole process, once a match is found, takes about four months.

Elliot’s kidneys have about five months left.

And then, there’s Noah.

His varsity baseball season was wiped out by the pandemic.

He didn’t join the summer baseball team, one of the few varsity kids who won’t be suiting up, because the heat is hard on his kidneys and the risk of getting the coronavirus is just too high.

Noah had to tell his coach about the baseball that would eventually grow into a football inside him. How he, too, will someday have to search for a transplant.

“It was the first time I talked about it with him,” Noah said. “He knew there was something wrong.”

Right now, Noah’s training at home for next spring. He wants to make varsity again.

And his dad wants to be there for it.

Transplant News Sharing // “Kidney Transplants” – Google News from Source www.washingtonpost.com

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