“That injury, I felt like it banished me from a relationship,” he said in an interview last week. “Like, that’s it, you’re done, you’re by yourself for the rest of your life. I struggled with even viewing myself as a man for a long time.”
But now, four weeks after the surgery, he said, “I feel whole again.”
He asked that his name not be published, because of the stigma associated with genital injuries. Except for his immediate family and a few close friends, he has told no one about the nature of his wounds, he said.
Dr. W.P. Andrew Lee, the chairman of plastic and reconstructive surgery at Johns Hopkins, said the goal of this type of transplant is “to restore a person’s sense of identity and manhood.”
For most men, that means regaining the ability to urinate while standing up and to have sex. Dr. Lee thinks transplantation can make both possible, though healing and nerve regeneration will take time. Urination is expected first, within a few months. Nerves grow from the recipient into the transplant at the rate of about an inch a month.
“We’re hopeful we can restore sexual function in terms of spontaneous erection and orgasm,” Dr. Lee said.
Although the scrotum was transplanted, the donor’s testes had been removed for ethical reasons: Keeping them might enable the recipient to father children that belonged genetically to the organ donor, something not considered acceptable by medical guidelines.
Because the recipient’s own reproductive tissue was destroyed, he will not be able to have biological children. He takes testosterone to compensate for the loss of his testes, and is being treated with another drug, Cialis, to encourage erectile function.
How many men might need this type of transplant is not known. Data from the Defense Department show that more than 1,300 men sustained so-called genitourinary injuries in Iraq and Afghanistan, and that 31 percent of those injuries involved the penis.
About 20 percent of the penile injuries were considered severe — but how many might warrant a transplant is not clear. Women in the military have also suffered genitourinary and reproductive injuries, but they are less common.
Teams at Johns Hopkins and at the Massachusetts General Hospital are both evaluating more candidates for the surgery — some hurt in the military, others affected by accidents or illness. But it can take a long time to find a matching donor — the Johns Hopkins patient waited more than a year on the transplant list — so no rush of operations is expected.
The Department of Defense has funded some of the research, but Johns Hopkins is paying for the first operation, which Dr. Lee estimated would cost from $300,000 to $400,000. The surgeons — nine plastic and reconstructive surgeons, and two urologists — worked for free.
Dr. Lee said he hoped for grants from the Pentagon to help pay for future operations, and also for insurance coverage, which is not available now for this type of transplant.
After the explosion that injured the soldier, he remained conscious, he remembered, but knew he was sinking into shock. He passed out on the medevac helicopter. His next memory was waking up in the United States, relieved to be alive.
Soon, the gravity of the damage hit. A military doctor told him it was permanent and irreparable.
“That was crushing, but when he walked away I thought, he hasn’t been a doctor long enough, he doesn’t know what he’s talking about,” the patient said. “You got all this technology, how can you tell me this is permanent? There’s got to be something.”
He felt isolated, even in the hospital among other wounded soldiers.
“There were times you’d be hanging out and guys would be talking about getting hurt, and that’s one of the first things when they get blown up, to check down there, and they would say things like, ‘If I lost mine I’d just kill myself,’” he said. “And I’m sitting there. They didn’t know, and I know they didn’t mean any offense, but it kind of hits you in the gut.”
He struggled with thoughts of suicide, he said: “When I would actually think about killing myself, I would think, ‘Am I really just gonna kill myself over a penis?’”
He learned to walk with prosthetic legs, left the hospital and lived on his own in an apartment. But he had trouble connecting with other people, and even when he no longer needed OxyContin for physical pain he kept taking it to numb his emotions.
He managed to wean himself off it. He saw a therapist. He earned a college degree and began making plans to attend medical school.
But relationships or even dating felt out of the question. If he got close to someone, he would have to disclose his wounds, and the thought filled him with anxiety.
“It is a lonely injury,” he said.
In 2012, he began consulting Dr. Richard J. Redett, the director of pediatric plastic and reconstructive surgery at Johns Hopkins, about a procedure to create a penis from his own tissue, possibly the skin on the inside of the forearm.
That operation makes urination possible, but requires an implant to achieve an erection. The procedure was appealing, but Dr. Redett also mentioned a future possibility that seemed much more promising: a transplant.
“Basically, if you do a transplant, you’re going to have the real thing again,” the patient said.
He decided to wait.
He passed an exhaustive screening process. Certain nerves and blood vessels have to be intact, along with the urethra, the tube that carries urine out of the body.
Candidates also have to qualify psychologically — to be able to understand the risks and benefits and stick to their anti-rejection medicine, as well as have a family or other support network.
Families of organ donors are asked specifically for permission to use the penis, and past requests have been made for research purposes. Carisa M. Cooney, a clinical research manager in plastic and reconstructive surgery at Johns Hopkins, said that when families hear that the goal is to help wounded veterans, many consent.
In this case, the donor’s family sent the soldier a message via New England Donor Services: “We are all very proud that our loved one was able to help a young man that served this country. We are so thankful to say that our loved one would be proud and honored to know he provided such a special gift to you. As a family, we are very supportive of all the men and women who serve our country and grateful for the job you did for this nation. Please know that this is truly a heartfelt statement, as we have several veterans in the family. We hope you can return to better health very soon and we continue to wish you a speedy recovery.”
The donor was from another state, and three surgeons from Johns Hopkins — Dr. Redett, Dr. Damon Cooney and Dr. Gerald Brandacher — flew there by private jet to operate on him, an exacting procedure to remove precisely the tissue that would be needed.
They had to coordinate with teams from other institutions who were collecting other organs, and at times there were 25 people in the operating room, Dr. Brandacher said. Part of his role was to remove nine vertebrae from the donor, to provide stem cells that the Johns Hopkins team would infuse into the recipient to help prevent rejection and minimize the amount of anti-rejection medicine needed.
The patient said that before the surgery, he wondered if he would accept the new body parts, mentally and emotionally.
“What tripped me out at first is sometimes I would get a thought like, ‘Am I going to be able to see it as my own?’” he said. “That thought would creep in. But once I had it done, that’s the only way I see it. It’s mine.”
Looking ahead, he sketched out his hopes.
“Definitely, to do well in school, to go to medical school and follow my career as a doctor, find my niche in the field and just excel at it. Maybe settle down and maybe eventually find someone, and get into a relationship, maybe. Just that normal stuff.”