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The Hard Work Of Waiting For A Hand Transplant

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Kevin Lopez remembers exactly when he knew he wasn’t like his friends and family.

“It just hit me one day,” he says. It was the morning he was picking out a shirt to wear for his first day of sixth grade. “I just looked at myself and I realized I was different.”

Kevin was born missing the fingers on his right hand. His arm and wrist are fully developed, and he has most of a regular palm. But he just has nubs where his fingers should start.

When he looked in the mirror that day, Kevin says he suddenly felt overwhelmingly self-conscious. So he took off the short-sleeved shirt he was wearing and put on a long-sleeved shirt instead. Even all these years later, he gets choked up re telling the story.

“It was at that point that it became more of a problem,” says Lopez, who is now 20. He’s waiting to become the first person to get a hand transplant because of a birth defect.

NPR is following Lopez through the process. This story explores how he ended up on the waiting list, and what it’s like for Lopez and his family as he waits.

Lopez grew up in a big, close family in Chicago. Seeing Kevin so sad was hard for his sisters. So one of his them, Jenny, thought it might help if he talked about his hand more. She suggested he write about it for a school assignment. Kevin burst into tears.

“I remember him just crying and said, ‘I just don’t want to be like this. I don’t want to be like this. I want you to help me,’ ” Jenny says. “He was telling me: ‘Help me, help me’ in some way. And I was like, ‘Well, I don’t know what to do. Right now there really isn’t anything we could do.’ ”

But Jenny says she told him, “OK, well, I’ll help you. We’ll figure it out. We’ll figure something out.”

Ever since then, Jenny’s been trying to find a way. But back then, Jenny had no idea what she could.

So Kevin had to learn how to live that way. And, he did pretty well, even playing baseball all through high school by catching and throwing with his good left hand. He also worked as a lifeguard at Lake Michigan during summers.

Then one day Jenny spotted an article in a magazine about a doctor who was doing hand transplants. “I was like, ‘Oh my God, that’s the guy. That’s the guy who’s going to help us. I just have to find him,’ ” she says.

Jenny tracked down the surgeon, W.P. Andrew Lee, at Johns Hopkins Hospital in Baltimore. After a lot of testing and counseling, Lee and his colleagues agreed to put Kevin on the waiting list when he turned 18.

“We thought, ‘Oh, they’re going to call us at any time,’ ” Jenny says. So Kevin put off starting college and his family decided Kevin should move closer to his surgeon with one of his sisters. Jenny, who is 10 years older than Kevin, volunteered.

“I’ll do it. I want to do this,” she remembers sayings. She took her son out of elementary school and broke off her engagement.

Jenny remembers the rainy day her family loaded her big red sofa and the rest of her worldly belongings into the U-Haul.

“All of our stuff got wet, moving it into the truck,” she says. “So it was a very gloomy day, just how we were feeling.”

Jenny and Kevin drove all night and got to Maryland the next day. And then, the waiting began.

“My life changed obviously dramatically,” she says, adding neither of them realized how long it would take.

Waiting for a hand is a lot more complicated than for organs like livers or kidneys. Those just have to match well enough so that the body won’t reject them.

A hand has to look right, too. It has to be the right size, age and skin tone. The first person who got a hand transplant ended up asking his surgeon to remove it.

Doctors are being very careful about finding a hand that will match Kevin well. Kevin’s case has been complicated by the fact that he’s Latino. Latinos don’t agree to donate organs as often as Caucasians, though rates of consent for donation among Latinos exceed those for blacks and Asian-Americans.

One morning in June, Kevin woke up, looked at his phone and found a bunch of missed calls and texts from Baltimore. He called his doctors.

“They told me that there was a possibility that we could have a donor,” Kevin says.

Jenny was in Savannah, Ga., for a bachelorette party for one of their sisters. “I went to go talk to my sister and I told her, ‘I have to leave. I have to drive back to Baltimore.’ And she said, ‘Why?’ And I said: ‘Kevin got called and it may be it.’ ”

The excitement didn’t last long. The donor’s family felt uncomfortable donating their loved one’s hand. Kevin was relieved in a way, but he was also disappointed. “‘Oh, wow, it didn’t happen,’ ” he remembers thinking.

But another time, everything seemed like it was going well. This time, the donor’s family consented, and the doctors texted a picture of the hand to Kevin. He took one look at it and thought to himself: “This is not the best possible match for me. So I’m not going to go through with it.”

The skin tone wasn’t quite right.

So Jenny and Kevin continue to wait.

They’ve been waiting now almost three years, which is longer than any of the other patients Kevin’s doctor is caring for.

Kevin even decided he would accept a woman’s hand once doctors explained that his hormones would eventually make it look more masculine.

As they wait, Kevin and Jenny are trying to get on with their lives. Kevin started taking classes at a community college. Jenny found a new job, and even recently got a big promotion. But living in limbo is hard for both of them. And sometimes Jenny lets her fears run wild.

“Sometimes I’ll even play it out in my head: ‘Well, what if the surgery goes so bad and you know — God forbid — he passes away? Then it’s my fault,’ ” she says. “It’s just horrible things I start thinking. I don’t want to lose my brother. … If anything bad happened I would never forgive myself for it.”

Hand transplants are really complicated. Beyond the surgery itself, Kevin could end up worse off if he never learns how to use his new fingers or his body rejects the hand. And the anti-rejection drug he’ll have to take for the rest of his life comes with side effects.

But Kevin says he understands the risks.

“It’s worth anything — it’s worth everything. That’s how bad I want it,” he says. “It will give me that sense of happiness that I don’t have without it — that I could only get from having the hand. And that’s ultimately why it’s totally worth it.”

So every time a Baltimore number pops up on their phones they freeze. “My stomach sinks,” Kevin says.

But so far the closest they’ve ever come has been in Jenny’s dreams. “I dreamt that Kevin had the surgery, but I couldn’t see it,” she says. “For some reason they were not letting me see Kevin. I remember the feeling — I was so worried.”

In her dream, she remembers thinking: “‘Why can’t I go? Why can’t I see it?’ ” And, she remembers crying. “It was just more waiting,” she says. “We were just waiting to see.”

Copyright 2015 NPR. To see more, visit http://www.npr.org/.

Transcript :

ROBERT SIEGEL, HOST:

Kevin Lopez is on a waiting list to become the first person to get a hand transplant because of a birth defect. It’s a complicated surgery and controversial. NPR health correspondent Rob Stein first introduced us to Lopez earlier this spring, and today, what being on that list has meant for him and his family.

ROB STEIN, BYLINE: This is a story about a young man waiting for an operation that will change his life, but it’s also the story of a sister’s quest to make her little brother happy. Both stories begin in the Lopez family home in Chicago where Kevin Lopez grew up in a big, close family.

KEVIN LOPEZ: Family is everything, and we’ve always had that mentality, especially – Jenny’s, like, the most selfless person I know so…

STEIN: Jenny is one of Kevin’s four sisters.

JENNY LOPEZ: Growing up we were always very protective of him because he was very shy and, of course, making sure he’s OK.

STEIN: Because Kevin was born missing all the fingers on his right hand. His arm and wrist are fine, and he almost has a regular palm, but just kind of nubs where his fingers should start. That may have been a big deal to his sisters, but when he was really little, not so much for Kevin.

K. LOPEZ: As a kid, kindergarten, first grade and all that, I was fine. I wasn’t even self-conscious at school.

STEIN: Then something changed.

K. LOPEZ: It just hit me one day like – like, I’m different, like…

STEIN: It was Kevin’s first day of sixth grade.

K. LOPEZ: It was in the morning. I was getting ready. And I put on a white polo – a short sleeve white polo – and then I just looked at myself. I realized I was different. And I looked at the short sleeve and I was like – I was too self-conscious to wear it. So I took it off and I wore a long sleeve. And I never did that before that grade, so I think it was at that point that it became more of a problem I guess.

STEIN: It must’ve been hard.

K. LOPEZ: A little, yeah, I would say so.

STEIN: Kevin being so sad was hard for Jenny to see. Most of the time he was a stoic little guy. She thought it might help Kevin if he talked about his hand more.

J. LOPEZ: So he had to do a school assignment and he had to write about something that makes him different.

STEIN: So she asked him…

J. LOPEZ: Well, why don’t you talk about your hand?

STEIN: Kevin just burst into tears.

J. LOPEZ: I remember he just crying and said I just don’t want to be like this. I want you to help me. He was telling me help me. Help me in some way. And I was like, well, I don’t know what to do right now. There isn’t anything we could do. So I just told him, OK, well, I’ll help you. We’ll figure it out. So ever since that day I always felt this inclination and need to find a way to help him.

STEIN: But Jenny had no idea how she could help her little brother so Kevin had to learn to live that way. And he did pretty well, playing baseball by catching and throwing with his good left hand, even working as a lifeguard at Lake Michigan shore during summers. But Jenny never stopped thinking about how she could help Kevin. Then one day…

J. LOPEZ: I was at the gym.

STEIN: She spotted an article in a magazine…

J. LOPEZ: I want to say it was a Time magazine.

STEIN: …About a doctor who was doing hand transplants.

J. LOPEZ: I was like, oh, my God. That’s the guy. That’s the guy who’s going to help us. I just have to find him.

STEIN: Jenny tracked down the surgeon at Johns Hopkins Hospital in Baltimore. And after a lot of testing and counseling, they put Kevin on the waiting list when he turned 18.

J. LOPEZ: We thought, oh, they’re going to call us at any time.

STEIN: So Kevin put off starting college and his family decided Kevin should move closer to his surgeon and that one of his sisters should move with him. Jenny, who’s 10 years older, stepped forward.

J. LOPEZ: I said, oh, I’ll do it. I want to do this.

STEIN: So she gave up a job she had for 10 years. She took her son out of elementary school and she broke off her engagement. Jenny remembers the rainy day her family loaded her big red sofa and the rest of her worldly belongings into the U-Haul.

J. LOPEZ: All of our stuff got wet moving it into the truck, so it was a very gloomy day, just how we were feeling.

STEIN: Jenny and Kevin drove all night and they got to Maryland the next day.

J. LOPEZ: We’re like, OK, we’re here.

STEIN: And then the waiting began.

J. LOPEZ: My life changed dramatically and then I wondered if what I’m doing is the right thing, you know, being alone and without your family or with any friends.

STEIN: And doing it with no end in sight. Waiting for a hand is a lot more complicated than for a liver or a kidney. Those just have to match close enough so the body won’t reject them. A hand has to look right too – the right size, age, skin tone. The first person who got a hand transplant ended up asking his surgeon to take it off. So doctors are super careful about finding a hand that matches well. They told Kevin…

K. LOPEZ: They would always let me know if they found a hand and then tell me what do you think? Do you think it’s a good match for you? Like, do you want it?

STEIN: Kevin hasn’t had to answer that question very much so far. Part of the reason is he’s Latino and Latinos don’t donate organs as often as Caucasians, so finding a hand for Kevin has been even harder. But one morning, Kevin woke up, looked at his phone…

K. LOPEZ: I had (laughter) I had a few missed calls.

STEIN: And text messages from Baltimore.

K. LOPEZ: They told me that there was a possibility that we could have a donor.

STEIN: Jenny was in Savannah. One of their sisters was having a bachelorette party.

J. LOPEZ: And I went to go talk to my sister and I told her I have to leave. I have to drive back to Baltimore, and she’s like, why? And I said Kevin got called and it may be it.

STEIN: The excitement didn’t last long. The donor’s family felt uncomfortable donating their loved one’s hand. Part of Kevin was relieved, but a big part was disappointed.

K. LOPEZ: Oh, wow, it didn’t happen.

STEIN: But another time everything looked good. The family said OK, so the doctors texted a picture of the hand to Kevin. He took one look at it and thought to himself the skin’s just not right.

K. LOPEZ: This is not – this is not the best possible match for me, so I’m not going to go through with it.

STEIN: It’s not that Kevin’s picky. He’d even be OK with a woman’s hand once doctors explained that his hormones would eventually make it look more like his other hand.

K. LOPEZ: They said, like, over time it would – I mean, it wouldn’t necessarily look like a female hand on me.

STEIN: So Jenny and Kevin wait. They’ve been waiting now almost…

K. LOPEZ: It’ll be three years.

STEIN: Longer than any of Kevin’s doctors’ other patients.

J. LOPEZ: Do you want a milkshake?

K. LOPEZ: Yeah, sure.

STEIN: Kevin and Jenny are trying to get on with their lives. They often make breakfast together before Kevin heads off to a community college where he’s taking classes.

J. LOPEZ: Do you want the protein or you just want it like that?

STEIN: And Jenny heads off to work. She recently got a big promotion, but still, this limbo is hard and sometimes Jenny lets her fears run wild.

J. LOPEZ: Sometimes I’ll even play it out in my head, well, what if the surgery goes so bad and, you know, God forbid, he passes away? Then it’s my fault and I’m going to lose my brother and I would just never forgive myself.

STEIN: Hand transplants are really complicated, and Kevin could end up worse off if he never learns how to use his new fingers or his body rejects the hand. And the anti-rejection drug he’ll have to take for the rest of his life is really dangerous. Kevin says he gets all this.

K. LOPEZ: It’s worth – it’s worth anything. It’s worth everything. It’s just that’s how bad I want it to happen. And it’ll give me that sense of happiness that I don’t have without it that I could only get from having the hand.

STEIN: So every time a Baltimore number pops up on their phones…

J. LOPEZ: We’re always like – we’re on edge all the time.

K. LOPEZ: Every time I see Baltimore I even hesitate to answer at first ’cause my stomach sinks, just – what is this? What’s going to happen right now?

STEIN: But so far the closest they’ve ever come has been in Jenny’s dreams.

J. LOPEZ: I dreamt that Kevin had the surgery, but I couldn’t see it. For some reason they were not letting me see Kevin. I was, like, so worried and I remember crying about it. It was just more waiting. It was – we were just waiting.

STEIN: Rob Stein, NPR News.

SIEGEL: And we’ll continue to follow Kevin Lopez and his sister on their journey to get Kevin a hand transplant. Transcript provided by NPR, Copyright NPR.