美国国家公共电台 NPR 'Interlaced Fingers' Traces Roots Of Racial Disparity In Kidney Transplants

MICHEL MARTIN, HOST:

Now for an improbable love story. Now, here you might be thinking, aren't the bookshelves groaning 1 with those? But here's a love story that did not just change two people's lives. It shed light on inequalities that our next guest says are deeply embedded 2 in a system that affects thousands of people every day.

The love story starts with Dr. Vanessa Grubbs. She was a family doctor, and she hadn't planned on falling in love with a man who'd been living with kidney disease since he was a teenager. But when she did, it set her life on a new course. Appalled 3 by his years'-long wait time for a kidney donor 4, she decided 5 to donate one of her kidneys to him. And then she began to study, document and fight against what she began to see as subtle but nonetheless very real racial biases 6 in the decisions over who gets those precious transplant organs.

Oh, and the guy? She married him. And 11 years later, they are still going strong. She writes about all this in a candid 7 new memoir 8, "Hundreds Of Interlaced Fingers." And I started our conversation by asking her how falling in love with a man living with kidney disease changed the way she thought about kidney disease.

VANESSA GRUBBS: When I saw patients with kidney failure, it was all about taking care of the numbers, getting the orders right. I really wasn't engaged in their lives. I was taking care of diseases and not necessarily patients with illnesses. Through him I could see that dialysis isn't easy. People have cramping 9. They can feel really tired after. Sometimes they get infections. Robert was only 26 when he started dialysis. And by then, he had, you know, kind of figured out his new normal.

MARTIN: Could you just talk a little bit about what it's like for him. Like when you met him, what was his life like? What was hard about it?

GRUBBS: Because he was such a young man, dialysis changed the way he saw life. No longer could he have the luxury of hoping about a future because it wasn't guaranteed on dialysis. We lose 20 percent of our dialysis patients every year. The dialysis procedure itself can really sap the energy, particularly if they're only having dialysis three times a week, which is what he was going through.

For him, he needed to take a break after dialysis. Otherwise, he would end up paying for it like feeling really lightheaded. Once he even passed out at work. So one of his biggest ways to deal with it was to go watch a movie or occasionally go get a mani-pedi. A lot of people wouldn't believe that to see him because he is a big linebacker kind of guy, but he very much enjoys getting his mani-pedis.

MARTIN: Knowing all this, I mean, knowing that, you know, it can be hard to travel, that it can be fatiguing 10, did you hesitate to get involved with him?

GRUBBS: I did hesitate about him being on dialysis. And what I was really concerned about was his dialysis access. And if you don't have your dialysis access, which is the way that we are able to connect the person to the machine, then they're in trouble because that's really their lifeline. And so I asked to see Robert's fistula - that's his dialysis access - on the second date. And for me to see how robust 11 it was reassured 12 me that it was OK to consider getting involved with him.

MARTIN: Yeah. That's not generally something that you'd ask on Tinder but maybe we should incorporate that? You know, will you show me your fistula?

GRUBBS: You know, I - yeah. You know, we joke that instead of him approaching women with what's your sign, it was what's your blood type? Maybe we can be compatible. It's medical nerd humor.

MARTIN: Medical nerd humor. Well, there you go. So you're dating. You're getting to know him, and you start going to dialysis with him. When did you start to think, why is he waiting so long for a donor when he is otherwise healthy except for his kidney disease? Certainly not an intravenous drug user, has insurance, basically none of the stereotypes 13 people may have about kidney patients.

GRUBBS: Yeah. It was when I went with him to his transplant evaluation 14. He got a notice that he was nearing the top of the list. And this is something where they want to just check on a person, make sure they still want to transplant, make sure they're still healthy enough. And it was quite an eye-opening experience.

You know, as I said, I was a primary care doctor at the time, but I really had no idea about what happens in this kidney transplant world. And it was in that moment that I thought, oh, my goodness, this system is really biased 15. And it was in that moment that I said, you know, we should see if I can give you one of my kidneys.

MARTIN: Yeah. Here's where we can kind to get into the nitty gritty here. You know, you write, for example, that African-Americans are 1 in 3 of the candidates awaiting kidney donation but they receive only 1 in 5 of the donated kidneys. White people are also about a third of the candidates are waiting kidney donations but they receive every other donated kidney.

And then you say it is an assumption that African-Americans or blacks don't donate enough organs. That's not true. So what is the deal? Why is it that African-Americans are, as you put it, good for harvest but not for planting? What conclusion did you come to?

GRUBBS: In addition to being inspired to be Robert's donor, eventually I decided to become a nephrologist really in an effort to do something for everyone else. I mean, I gave Robert a kidney. For everyone else, it was to try to do research into the area. And being in nephrology really opened my eyes to just how big the problem is throughout the system.

The problems start way before a person gets to transplant. And all of these things have room for human error. So, for example, people have to know that they have kidney disease. We know for a fact that most people aren't aware that they have kidney disease. You can't get to even the evaluation unless a nephrologist refers you and you have health insurance that will pay for the evaluation.

MARTIN: You and your guy, Robert, are still together.

GRUBBS: Yeah.

MARTIN: How's he doing?

GRUBBS: He's doing really well. We celebrated 16 our 12th transplant anniversary in April. And we celebrate our 12th wedding anniversary in August. And he never required dialysis after the hospitalization. He's leading a very full life, even has this dream job right now.

MARTIN: That was Dr. Vanessa Grubbs. She is a nephrologist at Zuckerberg San Francisco General Hospital. She was kind enough to join us from member station KQED. Her new book, "Hundreds Of Interlaced Fingers: A Kidney Doctor's Search For The Perfect Match," is out now. Dr. Grubbs, thank you so much for speaking with us. And our very best wishes to you and your guy.

GRUBBS: Thank you so much.