Will A Transplanted Hand Feel Like His Own? Surgery Raises Questions
When Kevin Lopez opens the door to his Greenbelt, Md., apartment to greet a visitor he's never before met, he initially conceals his right hand.
"I'm self-conscious, definitely, about my right hand," he says. But eventually Lopez relaxes.
"I was born like this," he says. "As you can see, I don't have any fingers." It bothers the 20-year-old enough that he has volunteered to do something drastic: to have his right hand removed and replaced with another person's hand via surgery.
"It's something I always wanted to do," Lopez says. Just the idea of being able to reach out to someone, matter-of-factly, without shame, was something he always wanted.
Hand transplants have been hugely controversial for decades because, to prevent rejection, patients have to take powerful drugs that suppress the immune system for the rest of their lives. It's one thing to do that for a liver or a heart — vital organs a person needs to survive. It's another thing to undergo that sort of ordeal for a hand, something many people live without. But dozens of hand transplants have been done around the world over the last 15 years or so, and more surgeons are starting to do them.
Until now, everyone who's had such a transplant got it because of an accident, an attack, or an illness. Lopez could be the first person to get a new hand because of a birth defect.
"I really want to do it," he says again. "Just to ... be able to do things normally."
Lopez has had to figure out his own way to do all sorts of things that most of people take for granted. To wash a cup, for example, he uses his left hand to put a sponge on the palm of the hand that's missing the fingers, and then grabs a dirty coffee cup with his left hand.
"I place the sponge on my right hand as a sort of ... holder," he says. He then slips that hand into the cup and uses it to move the sponge around.
To tie his shoes, Lopez pins one lace with his fingerless hand while he loops the other lace around it and makes a knot with his left hand. To play baseball, he learned to catch with his left hand, take off the glove, and then throw the ball with the same hand.
But Lopez always wondered: What would life would be like with fingers on both hands?
"I think I would just be able to project a very strong sense of confidence, he says, "just walking boldly with two hands. I would be able to have higher self-esteem ... to do that, and not be different."
Lopez is going to a community college while he waits for a transplant. He moved from Chicago to Maryland about six months ago so he could be closer to his surgeon at Johns Hopkins in Baltimore.
But there's a big debate among physicians about the ethics of such surgery.
"I can understand why ... this young man would want to have two hands and look like everyone else and be whole," says Dr. Lainie Friedman Ross, a bioethicist at the University of Chicago. Still, she has concerns.
"Number one is, he's lived his whole life and he's quite functional," she says. "He's overcome many of the limitations. He's a functioning member of our society."
And, Ross says, a hand transplant could end being a huge disappointment to Lopez for lots of reasons. One could be psychological.
"It requires people to accept somebody else's body part as their own," she says. "It's a problem in all transplants, but this is a visible transplant, and so raises lots of psychological issues."
The first person to have hand transplant surgery couldn't get used to having someone else's hand; he ended up asking his doctors to remove it.
"We don't want that to happen" to Lopez, Ross says.
But even if Lopez is OK with that aspect of the experience, there's no guarantee the new hand will work or how well it will work. Lopez never had fingers on his right hand. So no one knows whether his brain is even wired to be able to use them. He'll need at least a year of intense rehabilitative therapy to find out. And even after all that, his body might reject the hand.
"And if he loses this hand, then what?" she says.
Even if the new hand does work, there are risks from the anti-rejection drugs he'll need to take for life. The medicine suppresses the immune system, so he'd be vulnerable to life-threatening complications from a routine infection, and at increased risk for serious health problems, such as diabetes and cancer.
"These are huge risks," Ross says. "He's 20. And I hope he fully understands it. You know, at 20 it's easy to say, 'Oh, if I shorten my life by 10 years, no big deal' — because you're 20, young and healthy. And I hope it's been drilled into him — that he really appreciates those risks."
Lopez's surgeon, Dr. W.P. Andrew Lee at Johns Hopkins, says Lopez went through intense physical, emotional, and psychological screening, testing and counseling to make sure he understands the risks and how hard the transition will be.
"It was only after this thorough discussion involving not only him, but also his family that together we come to the decision that we do want to go ahead and try the hand transplantation," Lee says. "Because we believe there is a significant likelihood that it will improve upon what he currently has."
Most transplanted hands end up working really well, Lee says, and the procedure isn't nearly as risky as it used to be. He's testing a new way to prevent rejection that, he says, eliminates much of the risk. Lee notes that brain scans he performed on Lopez make him confident Lopez can learn to use his new fingers.
"There are always risks to any surgery but the small risk can be justified," Lee says, "based on the benefits Kevin will have from having an entirely normal hand with digits that move independently — with feelings that go all the way to the fingertips."
A hand does more than just physical things, Lee points out.
"The human hand is also used in social interaction and expression of emotion," he says. "So, for example, it's pretty hard to hold hands or hug someone with a prosthetic. But that's a function that a transplant hand is perfectly capable of."
Lopez says he understands the risks and that the recovery will be very difficult.
"I could definitely live the rest of my life without it and I would live fine," Lopez says. "I would live OK. But I don't think I would ever be as happy as I could be throughout my life if I wasn't given the opportunity to try it. If there's one thing I wanted in life more than anything it would be the transplant."
So, Lopez and his doctors are waiting for a hand that's a good match. They have no idea when that might happen. But the call could come at any moment.
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Transcript
MELISSA BLOCK, HOST:
We're about to meet a young man who is hoping for a hand transplant. These complex surgeries were once considered highly experimental, but that perception is starting to change as more surgeons learn how to perform them. And for the first time, the nation's transplant network has set up a system that allows people to donate body parts such as hands. NPR's Rob Stein is taking a look at this new era in transplant medicine by following a potential recipient.
ROB STEIN, BYLINE: This is a story about Kevin Lopez. He lives in Greenbelt Maryland which is about a half hour outside Washington, D.C.
Hi, Kevin?
KEVIN LOPEZ: Rob Stein.
STEIN: Hi, how are you?
LOPEZ: Come on in.
STEIN: Hi.
He's 20, and he shares a small apartment with his sister and her dog, Juno.
(DOG BARKING)
LOPEZ: I'm sorry. Sorry about that. Juno. Juno.
STEIN: After I get in there, I kind of notice he's hiding his right hand. So after a little bit, I ask him about it.
LOPEZ: Yeah, (laughter) I'm a - I'm self-conscious, definitely, about my right hand. It's - yeah.
STEIN: After we talk a bit more, Lopez clearly starts to relax and leave his hand out in the open where I can see it.
LOPEZ: Well, I was born like this. As you can see - I don't know - I don't have any fingers, but it's not - it's - I would call it maybe a stump. I don't know what you would call it.
STEIN: You know, I wasn't really quite sure what to say, actually. I wouldn't call it a stump - he has a regular right arm and a wrist and a palm, but where his fingers should start are just kind of the beginnings of fingers. But this is why I've come to see Lopez - because he's volunteered to do something drastic about his stump - to have it removed and replaced with somebody else's hand, to get a hand transplant.
LOPEZ: Something I've always wanted to do. The possibility of having another hand - it's just. It's just something about it that I've always wanted - something that I would be able to just put out there and not necessarily be, I guess, ashamed in a way. Yeah.
STEIN: But this operation - this hand transplant Kevin wants - it's been really controversial for decades, and here's why. Patients who get a hand transplant have to take these really nasty drugs for the rest of their lives to suppress their immune systems and keep their bodies from rejecting the hand. It's one thing to do that for a heart or a liver. You need those to survive. It's another thing entirely to do it for something like a hand. But dozens of hand transplants have been done around the world over the last 15 years or so for people who've lost hands because of a bomb exploding, an accident, or an illness. Kevin Lopez could be the first person to get a hand transplant because of a birth defect.
LOPEZ: I don't know. I really want to do it just to have - you know, be able to do things normally.
Just wash my hands real quick.
STEIN: Lopez has had to figure out his own way to do all sorts of things most of us take for granted like, you know, washing dishes. Lopez shows me how he does it.
LOPEZ: I place the sponge on my right hand as a sort of a holder. My right hand is able to fit into cups, and I don't think any other people's hands are able to do that, and I can wash out the cup.
STEIN: To tie his shoes, Lopez uses the fingerless hand to pin one lace in place while he loops the other lace around it and makes a knot with his left hand. To play baseball...
LOPEZ: I learned to catch with my left hand with the glove, take off the glove, and then throw with the same - with my same left hand.
STEIN: You know, Lopez has been able to get by really well, but he's always wondered, what would life be like if he had fingers on both hands?
LOPEZ: I think I would just be able to project a very strong sense of confidence - just walking boldly, you know, with two hands. It's just, I feel I would have a higher self-esteem - not be different, I guess.
STEIN: After spending time with Kevin Lopez, I realize that that was really what was driving his decision - the sense of wanting to feel whole and feel more confident as he walked through the world. So about six months ago, he picked up and left his home in Chicago and moved to Greenbelt, Md., so he could be even closer to a surgeon at Johns Hopkins in Baltimore. He's taking classes at a community college while he waits. But there's a big debate about whether someone like Kevin Lopez should even get a hand transplant.
LAINIE FRIEDMAN ROSS: I can understand why this young man would want to have two hands and look like everyone else and be whole.
STEIN: Lainie Friedman Ross is a doctor and a bioethicist at the University of Chicago. She has lots of concerns about his decision.
ROSS: Number one - he's overcome many of the limitations. He's played baseball. He's gone to high school. He's a functioning member of our society.
STEIN: And Ross says getting a hand transplant could end up being a huge disappointment for lots of reasons.
ROSS: It requires people to be able to accept somebody else's body part as their own. It's a problem in all transplant, but this is a visible transplant, and so it raises lots of psychological issues.
STEIN: The first the first guy who got a hand transplant - he just couldn't deal with it. He just couldn't get used to having someone else's hand. He ended up asking doctors to take it off.
ROSS: We don't want that to happen...
STEIN: ...To Kevin Lopez. But even if he's OK with that part, there's no guarantee the new hand will work or how well it will work. He's never had fingers on his right hand so, you know, no one knows whether his brain even knows how to use them. He'll need at least a year of intense, full-time rehab just to find out. And after all that, his body may end up rejecting the new hand.
ROSS: And if he loses this hand, then what?
STEIN: And even if it does work, there are those risks from the drugs he'll need to take to keep his body from rejecting the hand. They suppress his immune system so he could die from some routine infection or, you know, get diabetes - even cancer maybe.
ROSS: These are huge risks, and he's 20. And I hope he fully understands at - you know, at 20, it's easy to say, oh, if I shorten my life by 10 years, no big deal because you're 20, young and healthy. And I hope that that's been drilled into him and that he really appreciates those risks.
STEIN: I put all this to Lopez's doctor. His name is W.P. Andrew Lee at Johns Hopkins. He says, look, Lopez went through tons of tests - physical, emotional, psychological - and he got counseling to make sure he understands the risks and how hard all of this is going to be.
W.P. ANDREW LEE: And it was only after this thorough discussion involving not only him but also his family that together we come to the decision that we do want to go ahead because we believe there is a significant likelihood that it would improve upon what he currently has.
STEIN: Because these days most transplanted hands end up working really well, and they're not nearly as risky as they used to be. He's testing a new way to prevent rejection that he says eliminates a lot of the risk, and he's done brain scans that make him confident Lopez can learn to use his new fingers.
LEE: There are always risks to any surgery, but the small risk can be justified based on the benefits Kevin will have from having an entirely normal hand with the feelings that go all the way to the fingertips.
STEIN: That's important, Lee says, because a hand does more than just physical things.
LEE: The human hand is also used in the expression of emotion. So, for example, it's pretty hard to hold hands or hug someone with a prosthetic, but that's a function that a transplant hand is perfectly capable of doing.
STEIN: When I talk to Lopez about all this, he tells me he gets it. It's going to be really hard and really risky. But, you know, he wants it anyway.
LOPEZ: I could definitely live the rest of my life without it, and I would live fine. I would live OK. But I don't think I would ever be as happy as I could be throughout my life if I wasn't given the opportunity to try it.
STEIN: But why? Why go through all that? That's so much to go through.
LOPEZ: Yeah, I guess it is. I don't know. I guess I could put it this way. If there's one thing I wanted in life more than anything, it would be the transplant.
STEIN: So Lopez and his doctors are waiting for a hand that's a good match. They have no idea when that might happen, but it could come at any moment. Rob Stein, NPR News.
BLOCK: And we plan to follow Kevin Lopez and continue his story when that call comes through. Transcript provided by NPR, Copyright NPR.
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