With the help of a therapist, Lindsay Aronson Ess lifted her left arm, bent it slightly and touched her nose with a finger.
For someone who two months ago had no hands, this was a development beyond remarkable. In fact, Ess, 28, of Richmond is learning to use two new hands as she recovers from a rare and risky double hand transplant, accomplished in an extraordinarily delicate and complicated 11½-hour surgery that has given her both hope and a renewed sense of herself.
"I feel it's … a closer step to who God meant for me to be," she said Friday from her hospital bed, in between therapy sessions at the Penn Institute for Rehabilitation Medicine.
The first time she looked at the end of her arms and saw her new hands, Ess wept, a complex rush of emotions pouring forth: the culmination of a wish come true, gratitude and mourning for a donor she did not know, and the beginning of a new stage of life filled with great expectations but not without pain and struggle.
In some ways, the hard work has only just commenced, which is saying something for a young woman who has lived without hands and feet since 2007, when her limbs were amputated because of a severe infection that invaded her body after surgery related to Crohn's disease, a chronic inflammation of the digestive tract.
The transplant — the first of its kind at Hospital of the University of Pennsylvania, and it is believed to be the fifth bilateral, or double, hand transplant in the United States — was performed in September.
The hospital has delayed publicly disclosing the surgery until today in an effort to protect the identity of the donor, but a news conference was scheduled for this morning to discuss the surgery. The Richmond Times-Dispatch was allowed exclusive access at the hospital on Friday to Ess, as well as her mother, Judith Aronson, and lead surgeon Dr. L. Scott Levin
"Her life has been on hold for four years," said Levin, director of Penn Hand Transplant and a professor of both bone and joint surgery and plastic surgery. "Hopefully, we have helped her. I truly believe we have."
Ess was the subject of a May 2008 article in The Times-Dispatch that chronicled her life as she learned to live without arms and legs. She graduated in May 2007 from Virginia Commonwealth University with a degree in fashion merchandising. She had lined up a job to teach fashion marketing to high school students, but she never got there.
Her Crohn's disease flared up, and she underwent surgery to remove part of her intestine. Soon after, she fell seriously ill with sepsis, a life-threatening condition caused by a leaking section of her intestine.
Sepsis can cause microscopic blood clots that, according to the Mayo Clinic, can block nutrients and oxygen from reaching organs and extremities. Ess survived, but her limbs had to be amputated — her arms below the elbows, her legs below the knees — in August 2007.
She learned to use prosthetic legs and arms, and while she learned to run with her artificial legs, she never grew entirely comfortable with the cumbersome, high-tech arms. As a result, she preferred leaving off her prosthetic devices and, despite the awkwardness, using her residual arms for everyday tasks such as feeding herself, brushing her teeth and folding laundry.
During a 2008 session for a prosthetics-fitting session, she expressed her frustration with adapting to artificial arms and hands by muttering to no one in particular, "I wish I could have just one finger."
Now, she has 10.
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Ess has been eagerly anticipating a double hand transplant since not long after she lost her own. One of her Richmond physicians put her in touch with Levin, who at the time was at Duke University, where he was attempting to start such a transplant program. He wound up moving to the University of Pennsylvania in 2009, and Ess followed him.
But she was surprised when, on the way to a doctor's appointment in September, she answered her cellphone and it was Levin, telling her a donor had been identified through the Gift of Life Donor Program; Ess needed to be in Philadelphia in less than eight hours for surgery. An anonymous benefactor provided a private jet, and Ess arrived with plenty of time to spare.
While Ess was caught off-guard, those involved were anything but unprepared, Levin said, having gone through scores of meetings, surgical rehearsals and planning that utilized "basically every dimension of health care in this one case," even medical ethicists to make certain this was the right thing to do and Ess was the right candidate.
"We were hell-bent to be successful," Levin said. "Failure was not an option."
The surgery, which included a dozen surgeons, three anesthesiologists and 15 nurses, was like "conducting a well-rehearsed orchestra," Levin said. "Everything went like clockwork."
The donor's forearms and hands were attached to Ess just below her elbows. Bones were attached with plates and screws, muscle groups affixed to one another with anchors, arteries, veins and nerves connected with sutures.
The microsurgical techniques used in the operation are not new, but the field of vascularized composite allotransplantation is. VCA refers to the transplantation of multiple tissues such as muscle, bone, nerve and skin, as in hand or face transplants, according to the American Society of Transplantation.
Only about 60 people around the world have received hand transplants since the first successful operation was performed in France in 1998, according to Penn Medicine. The first hand transplant in the United States took place in 1999 at the University of Louisville. In 2009, University of Pittsburgh surgeons conducted the first bilateral hand transplant on a 57-year-old Georgia man who, like Ess, had lost his hands and feet to infection.
Penn Medicine is the seventh center in the United States to perform the surgery and only the third to successfully perform a bilateral hand transplant.
More than a month beyond the transplant, Ess has "exceeded our every expectation in terms of how she's come through this surgery," Levin said. He noted that success in hand transplants is highly variable, depending in large part on reinnervation: how well nerve function is restored in the transplanted hands. Nerves must grow into the muscles of the forearms and then down into the hands and fingers.
The process has started, Levin said, but unsurprisingly Ess is unable to manipulate her hands or fingers and has little feeling in her new arms. That could take months or even a year or two, Levin said.
And there's always a possibility such function will never return.
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Ess was lying in her bed at the rehab hospital, wearing a "Ghostbusters" tank top, each arm resting on a pillow beside her. Swelling was visible around her elbows where the transplanted arms were stitched to her old ones.
Although she has little feeling, Ess experiences shooting pains in her arms, much like phantom-limb sensation. It's just another of the side effects — such as the risk of transplant rejection for which she must take medication for the rest of her life — that go with the territory of such procedures.
Ess is warm, funny and a good listener. People gravitate to her. She has endured — and survived — more than anyone can imagine, and that can take its toll in patience and confidence.
On considerable medication, experiencing significant pain and knowing she faces months and months of rehabilitation and therapy, Ess is easily fatigued, and doubt creeps into her mind as she sometimes feels she's losing the battle in her quest for more independence and a life that she views as "normal."
"Sometimes I think in my dreams of just telling Dr. Levin I want to go home, that I don't want to deal with this anymore," she said. "But I know that's not the right decision."
Yet the determination that Levin said was one of the attributes that made Ess a good candidate for the transplant quickly resurfaced as she talked about her past and her future.
In recent years, she has directed numerous fashion shows, often for charity, and has taught classes, mentored students, moved into her own apartment and even gone sky diving.
She talks of the days when she will drive a car, own a home and get a dog. She's not sure what she wants to do as far as work, but she expects it to involve assisting others. She's considering pursuing a master's degree in clinical social work.
She has already adjusted her view of what the transplant means to her.
"I think all of this has taught me that what's on the outside is nowhere near in comparison to what's on the inside," she said. "This is not at all to do with what I look like. It's more to do with being able to … help other people. All this stuff I've learned since [the amputations]. … I feel like I have twice as large of a brain, and my empathy level and compassion level has gone through the roof."
Her mother, who has been by her daughter's side through the entire ordeal, was feeding Ess lunch as she spoke. She filled a fork with macaroni-and-cheese and broccoli and talked about her daughter's fearlessness and resolve, traits that have carried her to this point and which haven't changed.
"Lindsay's Lindsay," Aronson said. "She's not any different than she ever was."
On Friday, a pair of therapists rolled Ess to the hospital driveway in a wheelchair and helped her practice getting in and out of her mother's car. Such routine tasks, along with walking on her prosthetic legs, are different now with a shift in balance caused by the new arms, which she described as feeling like 10-pound weights hanging off the ends of her arms.
On the same day, certified hand therapist Gayle Severance worked with Ess, helping her raise and bend her arms, trying to strengthen muscles and keep them flexible, waiting for the nerves to grow. It's kind of like waiting for electricity to travel from a power plant to a far-away house at the end of the grid.
"The environment of her arms — the house — is in order," Severance said. "We're ready. We just need the power to come on."
Severance set a laptop computer in front of Ess and used Velcro and adhesive tape to secure a ballpoint pen to the outside of the protective padding covering Ess' right hand. Then, as Severance helped with the lifting, Ess, who goes by the nickname Lu, used the pen to tap the keys and compose an email.
first email sent with my own hands. yayyyyyyy. love yall.
That afternoon, a mile away in the hospital where her surgery took place, Levin checked his email and was floored to receive one from Ess.
"I saw this and just about fell off my damn chair," he said with a smile. "I'm just so pumped up about this. That's pretty amazing."
What might really knock Levin off his chair is something else Ess has in mind for a future she cannot see at the moment but believes is out there: running up the steps to the nearby Philadelphia Museum of Art, just as Sylvester Stallone did in "Rocky," and raising her arms — her new arms — in triumph.