Just in time for Thanksgiving, Will Lautzenheiser expressed gratitude Tuesday for an extraordinary gift: two new arms.
The 40-year old stand-up comic and former film teacher received a double-arm transplant from an anonymous donor and can already move his thumb and wrist. He appeared at a press conference with his arms in splints, and is expected to continue to gain function and sensation over the next several years.
“I hope to be able to live up to the memory of this man and make this worthwhile,” he said. “This person who is anonymous to me will always be as close to me as my own skin now, and it’s really an incredible gift.”
Lautzenheiser lost both arms and legs after an aggressive streptococcus A infection led to sepsis and required quadruple amputation in 2011. Earlier this year he was approved for a rare bilateral arm transplant.
“There were so many things that I didn’t even realize I missed doing and now the capacity for doing those things is within reach, literally within reach,” he told NBC News.
Will’s twin brother Tom described him as steadfast and said that since the amputation, Will has been clear about one thing, “Whatever it takes, he wants to live,” he said. “I’m hoping and I believe that his procedure, that his new arms will help him get his life back on track.”
It took a team of 35 clinicians, including 13 surgeons, to complete the surgery at Brigham and Women’s Hospital in Boston that lasted close to nine hours.
“You could not wish for a better patient,” said Dr. Bohdan Pomahac, Director of Plastic Surgery Transplantation. “He’s got the right attitude and he is incredibly diligent in everything he does.”
Lautzenheiser became one of the first Americans on a national waiting list for arm transplants in July, when the United Network for Organ Sharing (UNOS) and the Organ Transplant Procurement Network (OPTN) announced a change in regulation. UNOS/OPTN classified limbs and faces, considered vascularized composite allografts or VCAs, as other organs like kidneys, lungs, and hearts.
“These sorts of transplants are becoming more common, although they are still relatively rare,” said Dr. David Klassen, Chief Medical Officer for UNOS. It’s still very early since the establishment of a formal waiting list and UNOS gathering data to learn more about how it’s working, but Dr. Klassen sees potential for growth. “The whole community that is involved in this is sort of gradually expanding,” he told NBC News.
Since 2005, more than 85 hand/arm transplants and twenty partial or full face transplants have been performed worldwide. Brigham and Women’s Hospital is the only center in the U.S. to have performed both. They’ve completed three bilateral hand/arm transplants and seven face transplants.
Brigham and Women’s Hospital is among an elite group of 20 centers in the U.S. approved to perform these specialized VCA transplants. According to UNOS, ten patients are currently on the waiting list for VCA transplants and three transplants have been done since July.
More than 120 million people in the U.S. are signed up to be organ donors but the very personal decision to check that box on your driver’s license can be a struggle for many. At this point, checking that box and thereby registering through the Department of Motor Vehicles does not include authorizing face and limb transplants. UNOS has been clear that donation requests for faces and limbs must be “explicit and specific” and should be separate from considering “organ” donation.
The decision to donate is a very emotional, especially for limbs and faces because they are recognizable unlike internal organs, said Art Caplan, a medical ethicist at NYU Langone Medical Center and an NBC News contributor.
“It comes at a terrible time, almost always the unexpected death of a loved one and sometimes you don’t know what the person would have wanted and emotionally people have different views of organs than doctors do,” he said.
Lautzenheiser called the gift of donation extraordinary. His brother said, “It’s a wondrous thing that this procedure is possible and it wouldn’t be possible without the generosity of the donors and the donor’s loved ones.”
The surgical team said they expect the function of Lautzenheiser’s limbs to continue to improve over the course of the next several years as nerves regrow. Lautzenheiser will also need to remain on immunosuppression drugs to prevent rejection of his new limbs.
It may be possible to consider leg transplants in the future but for now, Lautzenheiser is focused on rehabilitating his arms.
“I think it will be at least a year or maybe two years before I start thinking about another major surgery that would require two years of rehab. I don’t know how much of my 40s I want to spend doing rehab,” he joked with a room full of reporters.
Tom Lautzenhauser said it’s been remarkable to watch his brother share his story and make the best of a bad situation. “Will is not unique in having challenges, but it’s how we respond to challenges that defines our character and shapes our world,” he said.