Hand Transplant Regret

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Broomstick
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Hand Transplant Regret

Post by Broomstick »

Yes, amazing but true - some people regret getting a transplant. As I have said before, life as a chimera only STARTS with the surgery, there is so much more that goes on afterwards. All too often the media trumpets the good side of these stories, it is much less common you see these sorts of stories.

Story here along with a video.
Augusta, Georgia (CNN) -- Jeff Kepner's new hands slump on the table, like ill-fitting, flesh-colored anchors fused to his arms.

Hashmark scars line his lower arm. His right index finger stubbornly curls while the rest lie straight.

Kepner fidgets in his seat and strains his neck to check the clock hanging on the wall, to see when today's therapy session is over.

No one can say exactly when Kepner's hand therapy will end.

More than a year after becoming the first person to receive a double hand transplant in the United States, Kepner's new hands jut from his arms like foreign objects that he cannot control.

"They're heavy," he said flatly.

Kepner's surgery last May at the University of Pittsburgh Medical Center in Pennsylvania generated headlines.

This week, surgeons at the Jewish Hospital Hand Care Center in Louisville, Kentucky, performed a 17-hour operation, the third double hand transplant in the United States.

That patient, Dr. Richard Edwards, a chiropractor, was injured in a burning truck in 2006. The Edmond, Oklahoma, man suffered severe burns on his face, back, arms and lost function of his hands.

Edwards' wife, Laura, reached out to Kepner's wife, Valarie, on Facebook after Kepner's transplant in May 2009.

"All of us are in the same situation," says Valarie Kepner.

As of August, there have been 61 hand transplant operations worldwide, according to the hospital.

And Jeff Kepner is one of them.

"I got it," he said about the surgery. "And I regret it. It's over and done with. I didn't dream there would be this much therapy."

Kepner's fingers do not bend to his will. He scoops things into the palm of his hands, but cannot distinguish textures, whether it's a wooden block or his wife's hands.

So every weekday for six hours, Kepner works with a hand therapist in Augusta, Georgia. He has made some progress: He can pinch items between the thumb and forefinger of his left hand.

His eyes glaze as he stacks plastic cups, scoops rubber balls and attaches plastic tubes together for the thousandth time. Kepner utters only a word or two to his therapist during the long hours of repetitive hand exercises.

The activities strain his upper body and are designed to rewire his brain to take control of his new hands.

He nibbles only half an apple and sips coffee for lunch. Since the surgery, he has lost about 60 pounds from his 5-foot-9-inch frame.

Friends and family had thought that perhaps by now the former pastry chef would again be getting ready to bake holiday cookies, just like the ones he made that dangled on a Christmas tree in the White House. The former softball player who had a nice fastball would be able to pick up a Wii remote and duke it out with his teenage daughter, they thought.

Instead, the surgery is just the beginning.

Kepner's kitchen shelf is crammed with Betty Crocker cookbooks -- cheesecake recipes and others from Southern Living collect dust. He has yet to play the popular Nintendo game, although daughter, Jordan, has challenged him.

"I feel bad. He sits through hours [of therapy] every day," said Jordan, 14. "I can't imagine what that's like."

But, she added, "He's strong."

Kepner met Valarie in the Air Force in San Antonio, Texas, and they bonded over similar hometown roots in Pennsylvania. After 20 years in the Air Force as a sergeant, Kepner went to culinary school, graduating in 1998.

Read their story here

A year later, Kepner lost both hands and feet to a strep infection. The bacterial infection stopped the blood flow to his limbs, blackening his hands and feet, as if they were frostbitten. The drugs used to fight the strep also damaged his joints, necessitating a double hip replacement.

After the amputations, Kepner gradually regained mobility using hooks for hands and walking on prosthetics. He found a part-time job at the local Borders bookstore.

"When I had the hooks, I worked and drove," he said. "I did lots of things."

He wasn't completely independent. His wife of 19 years helped him get dressed and showered, fitting him into special water-friendly prosthetics. Although he had some mobility with the prosthetics, Kepner functioned on his wife's schedule, instead of his own.

His wife first found out about the hand transplants, which would be free of charge to them because it's a clinical trial at the University of Pittsburgh. The surgery could restore full use of his hands, they hoped.

Although the surgery was free to the family, the amount of time Valerie Kepner, a government employee, has to leave work and the long stays in Pittsburgh have become an unexpected financial burden, the Kepners said.

On a recent August day, Valerie Kepner comes home from work, gives her husband a quick kiss and asks how his day was. The wrinkles in her husband's face loosen.

"We're not risky people," she said. "We're not the type of people who go bungee jumping. It was not a risky decision."

"You have to be well-informed. This is a long process," she said.

Unlike an organ transplant, a hand transplant is more complicated because it involves multiple types of tissue: bones, skin, tendon, nerves and blood vessels.

"For a hand transplant to work, it needs to function," said Dr. W. P. Andrew Lee, the lead surgeon in Kepner's transplant. "That's what's unique. It needs to move and have sensation."

It takes time, he said. In 2003, the doctor visited a double hand transplant recipient in Austria six months after the operation and was discouraged by the patient's lack of mobility or sensation.

But that patient improved eventually and can now disassemble a pen and put it back together.

"After three to four years, he had very good function in both hands," said Lee, chief of the division of plastic surgery at the Pittsburgh hospital. "I think he is a good example of how it can take years for function to return, particularly for a transplant at the forearm level. It's a much longer distance for nerves to generate from the forearm, wrist and hand. It can take years for function to return."

"All the hard work he has been doing will eventually pay off," Lee said of Kepner.

Hand and face transplants are controversial, because unlike organ transplants, it's not a matter of life or death, but a risky procedure to improve quality of life.

With hand transplants, Art Caplan, a bioethicist said, "you need to prepare for failure as well as success."

Kepner received a bone marrow transplant to re-educate his immune system, so he only needs one medicine to suppress his immune system. But Kepner still takes about 50 pills a day to counteract the side effects of the immunosuppressant.

"I don't see the light at the end of the process," Kepner said. "If three or four years later, nothing's going to happen, yes, I would say take them off."

His wife understands his disappointment.

"I understand he's very disconcerted because he was very independent," she said. "Here we are a year later. It's been very rocky. ... We're not giving up hope at this point."
Clearly, the man doesn't have total regret and still hopes for a good outcome... but I have to think he's got the right of it. If he can function better with hooks than with transplanted hands, well, I couldn't fault him if he went back to them.
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Re: Hand Transplant Regret

Post by Junghalli »

A pity, but I suppose this kind of thing should hardly be a surprise with complex new procedures. Hopefully cases like this can help teach us how to do it better in the future.
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Re: Hand Transplant Regret

Post by Themightytom »

Sounds like he has a pretty serious adjustment disorder.

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Re: Hand Transplant Regret

Post by Rye »

Themightytom wrote:Sounds like he has a pretty serious adjustment disorder.
It's not really a "disorder" to reject body parts that are not your own. Can you imagine waking up and one of your arms being from a person who was a different race, sex or general body type? Let alone arms that you can't feel textures with. A brain fixates on scars and spots and other imperfections anyway, so malformed limbs will stick out worse than sore thumbs to it.
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Re: Hand Transplant Regret

Post by Broomstick »

It does make me wonder if we'd be better off putting money into better mechanical prosthetics than into hand transplant surgery. Someone has to be the trailblazer, but I think it's not always appreciated how hard this can be on the patient.

The real verdict on this particular operation won't be until 3-4 years after .... which is a long time.
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Re: Hand Transplant Regret

Post by Temujin »

While I don't think it would be applicable for something like a hand (at least not yet), I would also like to see more work on using stem cells to grow/clone/whatever new organs from a person's own body to help avoid the whole rejection problem.
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Re: Hand Transplant Regret

Post by Themightytom »

Rye wrote:
Themightytom wrote:Sounds like he has a pretty serious adjustment disorder.
It's not really a "disorder" to reject body parts that are not your own. Can you imagine waking up and one of your arms being from a person who was a different race, sex or general body type? Let alone arms that you can't feel textures with. A brain fixates on scars and spots and other imperfections anyway, so malformed limbs will stick out worse than sore thumbs to it.
Let's make sure we're talking about the same thing.

http://psyweb.com/Mdisord/jsp/adjd.jsp
Adjustment disorders are defined as a inability or maladaptive reaction to an identifiable stressful life event(s) / stressor(s). ( e.g., divorce, family crises, ... ) Symptoms must occur within three months of the event(s) / stressor(s) and persisted for no longer than six months
Having someone else's hand is the identifiable stressful life event, the diagnosis is a little cumbersome because the time frame of persistence isn't from the moment of waking up with new hands, it is because the stressor is ongoing as the hands are still not working properly and the physical therapy requirements are ongoing. that being said it could be considered chronic rather than acute.

So getting back to your original post, I wouldn't be imagining I woke up with someone else's hands, I would be waking up with someone's hands I had previously spent quite a bit of desiring, preparing to receive, having surgically attached and then physical therapy to get used to.

Its not so much "Holy shit what are these and where did they come from??" as much as "This isn't as easy as I thought it would be and I'm still not used to it."

To treat an adjustment disorder you wouldn't necessarily suggest that the reaction is unreasonable, as I think you might have inferred from my post, but rather to identify and acknowledge the stressor, and identify how it is influencing behaviors and emotions.

They probably would have screened candidates to make sure that candidates didn't have a background suggesting a significant aversion to what would be taking place, ie, a religious belief that intrusive surgery is sinful, or a racial prejudice even, if a recipient was to receive the hands belonging to the race they were prejudiced against, BUT, this is pretty new stuff, and society hasn't really normalized hand transplants yet. These people are doing something unique and they seem to be organizing their own support group to cope.

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Re: Hand Transplant Regret

Post by Kanastrous »

From what I have seen of current prosthetics technology, for my part I suspect that I would much prefer a prosthetic. And they're only going to keep getting better.
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Re: Hand Transplant Regret

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Themightytom wrote:... or a racial prejudice even, if a recipient was to receive the hands belonging to the race they were prejudiced against...
Given the biology involved, it would essentially be impossible to receive a hand from a significantly different race. I'm not saying it could never happen, just that it's unlikely anyone will ever have to worry about it.
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Re: Hand Transplant Regret

Post by Kanastrous »

Interracial organ transplants are possible and have been accomplished...but yeah, they're rare. I bet HLA matching is the big problem.
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Re: Hand Transplant Regret

Post by Broomstick »

Exactly.

For some organs - such as blood - interracial transplants are commonplace (yes, blood transfusions are organ transplants). However, bone marrow transplants do not occur across races (except for those of multi-racial backgrounds). Thus, the likelihood of inter-racial transplants varies by organ.

Given the multiple tissue types involved in a hand (or face) transplant it is highly unlikely you'd have a match for everything BUT skin color.
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Re: Hand Transplant Regret

Post by Serafina »

So, how about cross-sex transplants then? How much genetic difference is there that actually matters for such things? What can and is transplanted there, and what isn't?

Thanks in advance
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Re: Hand Transplant Regret

Post by Kanastrous »

HLA type matching is gender non-specific so with an adequate match the donor's/recipient's sexes don't matter.
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Re: Hand Transplant Regret

Post by Broomstick »

Size, however, does matter in some circumstances, so large men tend to only have transplants from other large men, and small women from other small women. Most people, however, fall in the middle range and could easily wind up with a cross-sex transplant.

Hand transplants are a type where there needs to be some rough size compatibility, though there is some wiggle room.
A life is like a garden. Perfect moments can be had, but not preserved, except in memory. Leonard Nimoy.

Now I did a job. I got nothing but trouble since I did it, not to mention more than a few unkind words as regard to my character so let me make this abundantly clear. I do the job. And then I get paid.- Malcolm Reynolds, Captain of Serenity, which sums up my feelings regarding the lawsuit discussed here.

If a free society cannot help the many who are poor, it cannot save the few who are rich. - John F. Kennedy

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Re: Hand Transplant Regret

Post by Kanastrous »

Broomstick wrote:Size, however, does matter in some circumstances,
The only thing more incredible than your handing out a straight line like that is my self-control in not jumping on it...

...I read somewhere sometime about a young child who received a kidney transplant from a teenaged brother...and the description of the outsized appearance of the basically full-grown organ in the little kid's abdomen. Can't recall the source of that, so apply the old sodium chloride at your discretion...
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Re: Hand Transplant Regret

Post by Themightytom »

Broomstick wrote:Size, however, does matter in some circumstances, so large men tend to only have transplants from other large men, and small women from other small women. Most people, however, fall in the middle range and could easily wind up with a cross-sex transplant.

Hand transplants are a type where there needs to be some rough size compatibility, though there is some wiggle room.
This is an untapped gold mine of stand up comedy.

"Man I got a woman's bladder? Worse than useless..."
"yeah well I got a woman's HAND, I can only pick up a credit card"
etc etc. probably balanced out by some women complaining "Argh, I got a man's arm, and I accidentally threw my purse fifty yards" or "No honey, I had a man's eyeball transplant i can't stop looking at my own boobs."

Humor is actually a typical mechanism for normalizing the novel.

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