The arms belonged to someone else. Grueling work made them his own
BOSTON — In the lobby of Brigham and Women’s Hospital, a young boy stares at Will Lautzenheiser in his wheelchair. He tugs on his mom’s arm, pointing at Lautzenheiser’s metal legs.
But the observant boy misses what is truly remarkable about Lautzenheiser. It’s the arms and hands he uses to move the joystick on his wheelchair, snap on his leg prosthetics, and hug his friends. These limbs used to belong to someone else. A series of tragedies, medical triumphs, and hard work has turned them into his own.
Lautzenheiser, one of about 80 people worldwide with transplanted arms, can’t fathom what another American recipient told People magazine last month — that he had considered getting his transplants removed. Jeff Kepner said his limbs, swollen and lifeless in pictures, had not lived up to his expectations.
“Never. Not for a moment” has Lautzenheiser considered getting his transplants removed, he told STAT. “As soon as I saw them, I thought, ‘These arms are beautiful and I’m going to do all I can to make them work and keep them healthy and heal them.’”
And work he has.
“Arm transplants aren’t for the lazy,” he said.
Patients go into their surgeries fully aware that the procedure is experimental and might not succeed, though 95 percent of the transplanted limbs have had good outcomes, said Dr. Vijay Gorantla, administrative medical director of the Reconstructive Transplant Program at the University of Pittsburgh Medical Center. Fewer than 10 of the transplants have had to be removed.
To reduce the risk that their body will reject the new limbs, transplant recipients must commit to taking medication every day for the rest of their lives.
The surgery is followed by an intense 18 months of occupational therapy to sharpen a patient’s fine motor skills. For Lautzenheiser who had his operation in October 2014, rehab has been a full-time job since. He had his last scheduled occupational therapy session earlier this month, but he will continue with physical therapy to improve his gait.
A filmmaker and college professor, Lautzenheiser was teaching out West in 2011 when he caught an aggressive strep infection that progressed to sepsis and necrotizing fasciitis, costing him all four limbs. He still needs help from aides and his partner, Angel Gonzalez, especially with buttoning clothes and preparing meals. But Lautzenheiser can now write his name — in handwriting that isn’t much worse than it was before — grasp tiny objects like pegs on a pegboard and handle his own hygiene. Just a few weeks ago, after forgetting the splints he normally uses for support, Lautzenheiser managed to eat a bowl of ramen unassisted — his first truly independent meal in five years.
“This has restored so, so, so much,” Lautzenheiser, 42, says of his surgery. “Your hands are engines of communication and intimacy, and there’s a lot that can be expressed emotionally through your hands — and to have that restored, for me has been amazing. … People going down the street look at me with a lot less pity than they used to.”
Feeling whole again
Finding the right transplant patient is key: someone who has the emotional makeup to do the work that’s required every day for the rest of his or her life. The psychological aspects of success are far harder than the technical aspects of the transplant itself.
“Transplanting a limb is mostly a feat of organization rather than a feat of surgery,” said Dr. Simon Talbot, director of upper extremity transplantation at the Brigham, who helped lead Lautzenheiser’s care.
There were 35 people involved in Lautzenheiser’s nine-hour surgery. And they had to be ready to operate within a few hours. Lautzenheiser was lucky. After a year of testing and consultations with plastic surgeons, orthopedic surgeons, transplant experts, immunologists, psychologists, and social workers counseling to ensure he would be a good candidate for a transplant, he waited only five months for a donor who matched his blood type and physical characteristics.
Talbot, a reconstructive plastic surgeon who has been involved with three double arm transplants at the Brigham and one single arm transplant at Massachusetts General Hospital, said he’s choosy about his donors. They have to match the patient’s gender, size, age, skin tone, and immune markers, and the arms have to be in the best condition possible.
“You get one chance at this,” Talbot said.
Talbot won’t take arms with tattoos for fear that a family member of the donor might recognize them. Lautzenheiser doesn’t reveal the exact date of his transplant to prevent people from guessing the identity of his donor.
A good match is also crucial psychologically, Talbot said. People look at their hands more than their own faces, and he wants his patients to feel like their limbs belong. Lautzenheiser’s new arms tan faster than the rest of him — otherwise, he said, they’re a solid match for his own.
It’s psychologically damaging to lose limbs, Talbot said, to be different from other people in such a fundamental way. Little children stare. Their parents turn away. “That sense of social isolation is incredibly disempowering,” he said.
Transplantation can make people feel whole again.
Lindsay Ess is a model patient. She’s so dedicated to getting back the use of her arms that she competes with other disabled athletes on a CrossFit traveling team — called “Some Assembly Required.”
Ess lost both hands and feet in 2007 after surgery for Crohn’s disease left her with a systemic infection. She was 24 and had been about to start her first job.
Two years later, she signed up for a double hand transplant with doctors at the University of Pennsylvania, and she received her transplant five years ago.
She said she opted for the transplant because she never felt comfortable with prosthetics. They were all too heavy and awkward looking. Plus, in all of her dreams, her feet were still gone, but she had arms.
After her surgery, she considered physical therapy to be her vocation, and worked her new hands and arms five hours a day for two full years.
“This has to be successful,” said Ess, who now lives by herself in Richmond, Va. “I don’t want to fail at it. I’m not a good failure person.”
Though she’s proud of her independence, she hasn’t met all her goals. She still can’t handle buttons. “I buy pants that are a size bigger and wear a belt,” so she can slip them on easily. Jars and water bottles remain challenging to open. She struggles to wield a knife with enough force to cut vegetables. And she can’t pull her long brown hair into a ponytail. “I think eventually I’ll figure it out or somebody will teach me,” she said.
Having hands has enabled her to get more suitable leg prostheses that she can pull on by herself.
When children stare at Ess, she said she likes to explain what happened and how well she functions now. It bothers her if their parents pull them away before they can learn anything about what it’s like to go through life differently.
An exit strategy
Every transplant patient is different and every procedure has its hitches.
Lautzenheiser had to get a second surgery a year ago to realign his right hand, which was stuck perpetually facing upward. There’s still something about his new wrist bone that won’t allow his hand to roll over normally, and he admits that “I fight with my thumb sometimes.” Both arms still bulge at the point of transplant, where surgeons overlapped his own muscles with those of his donor.
For Ess, the antirejection medication has been hard on her kidneys. She developed a blood clot in her leg in April, which cost her some strength and fitness. Medication gave her diabetes; steroids left her bloated. And the former model still doesn’t feel feminine enough to be comfortable wearing a dress.
Her doctor, L. Scott Levin, chairman of the department of orthopedic surgery at Penn Medicine, said every transplant is a balancing act, trying to keep the good from outweighing the bad.
There are three basic things that can go wrong with transplant surgery: the recipient’s body can reject the new limbs; their kidneys can be strained by the antirejection medications; and their nerves can fail to grow into the donor’s muscles, said Levin, also a professor of plastic surgery.
Drugs that suppress the immune system protect the arms most of the time, if the patient takes them faithfully. And a commitment to physical therapy usually results in muscles that regain function. But all surgeries carry unpredictable risks.
If the side effects become unmanageable, surgeons can remove the transplants.
Pittsburgh’s Gorantla had to do just that with one patient: a Marine who lost his hand to a bomb. The man was a phenomenal success in terms of function, Gorantla said. Three years after his transplant, he was using his hands to eat with chopsticks and winning at PlayStation.
But young enough to still feel invincible, the man didn’t keep up his daily medications and missed checkups. His body eventually rejected the new limb.
“There is an exit strategy for hand transplantations,” Levin said.
‘They were already mine’
One difference between transplanting internal organs like a liver or kidney and external ones like arms: it’s easier to quickly detect when something is going wrong and intervene.
Sheila Advento has had a few rejection episodes, all of which she’s caught early because of some redness on her skin. A simple steroid cream usually stops the episode and her body goes back to accepting donor arms as her own.
“Being a patient, I do have a responsibility to take care of the transplants,” she said.
An aggressive bacterial meningitis infection cost her all four limbs in 2003, and Advento used prosthetics for seven years. She never really got used to them.
“They were a hassle,” she said. They had cables that would snag, parts that needed to be fixed. “They got heavy at the end of the day.”
In 2010, she became the first American woman to receive arm transplants.
“After I woke up after the transplants, they were already mine,” she said.
For the first two years she spent six hours a day, five days a week in therapy, Advento said. Her sensations of temperature, pressure, and texture are now almost as good as they were on her original arms, though she hopes to gain more control of a few extra muscles.
Advento, who lives in Hackensack, N.J., still works part time in the same billing department job she had before her illness. She talks to customers via a headset, writes when she needs to, and keeps up with her typing, even though she can’t use all 10 fingers the way she did when she was hired.
“I’m satisfied and I’m happy,” Advento said.
Recovery never stops
No one knows the outside limit of arm transplants.
Nerves regrow at a pace of about 1 millimeter per day. The less arm that needs to be transplanted, the more likely the patient’s nerves will regrow and give them good control over their new hand, says Dr. Curtis Cetrulo Jr., a plastic surgeon at Mass. General. One upside of immunosuppression drugs, Cetrulo said, is that they seem to promote nerve regeneration, perhaps explaining why “nerve recovery has continued to improve a lot longer than we thought.”
Doctors used to assume that any muscle control that didn’t come back after 18 months or so would never return. But what they’re seeing defies that assumption. Matthew Scott, the first American to receive an arm transplant, continues to see small improvements 18 years later, said Gorantla, who helped perform Scott’s surgery when he was at the University of Louisville.
“Functional recovery never stops,” Gorantla said. “The more you give in terms of physical therapy, the more the possibility of outcomes are.”
He was also involved in Jeff Kepner’s transplant and has spoken with Kepner about his disappointments.
It’s not clear why Kepner, who was the first person to receive two new arms, hasn’t regained as much motion as others, Gorantla said. Every patient is different.
Kepner’s nerves are still functioning well, so Gorantla believes he might see improvements with more physical therapy and some assistive devices.
The transplant was a huge success from an immunological perspective, Gorantla said. Kepner needs to take only one low-dose drug a day to keep his body from rejecting the transplants.
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Researchers are hoping that injecting transplant patients with stem cells from their donor will allow them to stop taking immunosuppressive drugs altogether. Cetrulo just received approval to give his next transplant patient the donor’s bone marrow cells along with arms.
Insurers usually don’t cover arm transplants because they’re still considered experimental, and Levin, at Penn, said expanded coverage would allow more patients to get the procedure and advances to come faster.
Respect for his donor
To get a sense of what kind of man Lautzenheiser is, consider this: after all four limbs were amputated, when he didn’t have the energy to teach college classes anymore, or the means to hold a camera, he became a stand-up comic, performing at comedy clubs near his Brookline, Mass., home.
After he received the arm transplant, he stopped cracking jokes in public. It felt disrespectful, he said.
“I’m always aware that these were someone’s arms,” he said. He would never forgive himself if treating the arms as a joke meant someone would turn away from organ donation.
He talks publicly about his story, hoping it will encourage other people to become donors if tragedy strikes.
Lautzenheiser still has goals to reach. His next milestone, he said, will be walking — rather than riding his motorized wheelchair — to the nearby movie theater.
He’s now planning his first film since the infection that took away his career; he can’t hold the camera himself, but will direct and edit. It will be a three- to four-minute tribute to the anonymous man whose arms he now carries and to the family members who decided to transform their own tragedy into such a precious gift.
Shooting starts Wednesday.
Image: Will Lautzenheiser at a press conference shortly after his transplant surgery. Courtesy of Brigham and Women's Hospital.