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 groaning¹ 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 embedded² 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. Appalled³ by his years'-long wait time for a kidney donor⁴, she decided⁵ 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 biases⁶ 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 candid⁷ new memoir⁸, "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 cramping⁹. 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 fatiguing¹⁰, 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 robust¹¹ it was reassured¹² 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 stereotypes¹³ people may have about kidney patients.

GRUBBS: Yeah. It was when I went with him to his transplant evaluation¹⁴. 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 biased¹⁵. 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 celebrated¹⁶ 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.

1 groaning   

adj. 呜咽的, 呻吟的 动词groan的现在分词形式

参考例句：

• She's always groaning on about how much she has to do. 她总抱怨自己干很多活儿。
• The wounded man lay there groaning, with no one to help him. 受伤者躺在那里呻吟着，无人救助。

2 embedded   

a.扎牢的

参考例句：

• an operation to remove glass that was embedded in his leg 取出扎入他腿部玻璃的手术
• He has embedded his name in the minds of millions of people. 他的名字铭刻在数百万人民心中。

3 appalled   

v.使惊骇，使充满恐惧( appall的过去式和过去分词)adj.惊骇的；丧胆的

参考例句：

• The brutality of the crime has appalled the public. 罪行之残暴使公众大为震惊。
• They were appalled by the reports of the nuclear war. 他们被核战争的报道吓坏了。 来自《简明英汉词典》

4 donor   

n.捐献者；赠送人；(组织、器官等的)供体

参考例句：

• In these cases,the recipient usually takes care of the donor afterwards.在这类情况下，接受捐献者以后通常会照顾捐赠者。
• The Doctor transplanted the donor's heart to Mike's chest cavity.医生将捐赠者的心脏移植进麦克的胸腔。

5 decided   

adj.决定了的，坚决的；明显的，明确的

参考例句：

• This gave them a decided advantage over their opponents.这使他们比对手具有明显的优势。
• There is a decided difference between British and Chinese way of greeting.英国人和中国人打招呼的方式有很明显的区别。

6 biases   

偏见( bias的名词复数 )； 偏爱； 特殊能力； 斜纹

参考例句：

• Stereotypes represent designer or researcher biases and assumptions, rather than factual data. 它代表设计师或者研究者的偏见和假设，而不是实际的数据。 来自About Face 3交互设计精髓
• The net effect of biases on international comparisons is easily summarized. 偏差对国际比较的基本影响容易概括。

7 candid   

adj.公正的，正直的；坦率的

参考例句：

• I cannot but hope the candid reader will give some allowance for it.我只有希望公正的读者多少包涵一些。
• He is quite candid with his friends.他对朋友相当坦诚。

8 memoir   

n.[pl.]回忆录，自传；记事录

参考例句：

• He has just published a memoir in honour of his captain.他刚刚出了一本传记来纪念他的队长。
• In her memoir,the actress wrote about the bittersweet memories of her first love.在那个女演员的自传中，她写到了自己苦乐掺半的初恋。

9 cramping   

图像压缩

参考例句：

• The bleeding may keep my left hand from cramping. 淌血会叫我的左手不抽筋。
• This loss of sodium can cause dehydration and cramping. 钠流失会造成脱水和抽筋。

10 fatiguing   

a.使人劳累的

参考例句：

• He was fatiguing himself with his writing, no doubt. 想必他是拼命写作，写得精疲力尽了。
• Machines are much less fatiguing to your hands, arms, and back. 使用机器时，手、膊和后背不会感到太累。

11 robust   

adj.强壮的，强健的，粗野的，需要体力的，浓的

参考例句：

• She is too tall and robust.她个子太高，身体太壮。
• China wants to keep growth robust to reduce poverty and avoid job losses,AP commented.美联社评论道，中国希望保持经济强势增长，以减少贫困和失业状况。

12 reassured   

adj.使消除疑虑的；使放心的v.再保证，恢复信心( reassure的过去式和过去分词)

参考例句：

• The captain's confidence during the storm reassured the passengers. 在风暴中船长的信念使旅客们恢复了信心。 来自《现代英汉综合大词典》
• The doctor reassured the old lady. 医生叫那位老妇人放心。 来自《简明英汉词典》

13 stereotypes   

n.老套，模式化的见解，有老一套固定想法的人( stereotype的名词复数 )v.把…模式化，使成陈规( stereotype的第三人称单数 )

参考例句：

• Such jokes tend to reinforce racial stereotypes. 这样的笑话容易渲染种族偏见。
• It makes me sick to read over such stereotypes devoid of content. 这种空洞无物的八股调，我看了就讨厌。 来自《现代汉英综合大词典》

14 evaluation   

n.估价，评价；赋值

参考例句：

• I attempted an honest evaluation of my own life.我试图如实地评价我自己的一生。
• The new scheme is still under evaluation.新方案还在评估阶段。

15 biased   

a.有偏见的

参考例句：

• a school biased towards music and art 一所偏重音乐和艺术的学校
• The Methods: They employed were heavily biased in the gentry's favour. 他们采用的方法严重偏袒中上阶级。

16 celebrated   

adj.有名的，声誉卓著的

参考例句：

• He was soon one of the most celebrated young painters in England.不久他就成了英格兰最负盛名的年轻画家之一。
• The celebrated violinist was mobbed by the audience.观众团团围住了这位著名的小提琴演奏家。