NEWS

An arm transplant? 'It will just blow their mind'

Shari Rudavsky
IndyStar

Jeff Swedarsky suffered through a year of life after losing his arm in a freak accident.

He removed the mirrors from his house, not wanting visual reminders of what he had lost.

He sank into a deep depression.

He tried and rejected a prosthetic arm.

Even the simplest tasks from dressing himself to typing proved challenging for the 1999 North Central High School graduate. He struggled to relearn how to walk and head up stairs; the loss of his 25-pound limb threw off his balance. His wife, Sharone, helped as much as she could.

And then there was the pain. Intense, gripping pain where his left arm had once been. Pain that left him dependent on pain pills to get through the days and nights. Pain that left him despairing about the future.

Until a possible, if improbable, solution arose: an arm transplant.

Fewer than two dozen people have undergone this procedure. Most medical centers do not perform them. Many people who consider the option decide against it, not wanting to take powerful anti-rejection drugs for the rest of their lives to make the transplant a success.

“Sharone would ask me, ‘What happens if this doesn’t work out?’" Jeff said. "And I would say, ‘No this is going to work out. There’s nothing else.”

But what’s plan B? Sharone would counter.

There is no plan B, Jeff would respond.

A freak accident

Flash back to late spring 2014. Swedarsky, owner of Taste Indy Food Tours, was prospering. His company, Food Tour Corp., was expanding. He and Sharone, who are based in Washington, D.C., were expecting their first child in December.

On June 6 Jeff and Sharone headed out to meet friends of theirs, an engaged couple, and attend an outdoors jazz concert in Washington. They brought snacks and drinks in a cooler. After the concert ended, the four decided to check out a boutique hotel the engaged couple was considering as a wedding venue.

While the others explored the historic space, Jeff leaned casually on a railing that bordered a spiral staircase that led down to the lobby four stories below. Somehow, to this day he does not know how, he found himself tumbling over the railing headfirst.

As he fell, he saw the floors going by. About 15 feet above the ground, he caught himself on the railing with his left hand, clutching as hard as he could. Years of weightlifting five days a week for 20 years paid off.

He swung himself around feet-first, but the laws of physics and the limitations of human anatomy rendered a horrible blow. The force of the movement ripped his arm from his body a few inches above the elbow. He fell to the ground on his feet. His arm dropped separately.

Shocked, his friends and wife gazed over the staircase and then started running down.

“I saw him landing there and his arm over here,” Sharone recalled. “It had already severed.”

Jeff passed out but briefly.

Then he came to and started screaming. Save my arm! Save my arm!

His friend had enough wits about him to swipe off his belt, tourniquet what remained of his arm and snatch the severed limb from the floor and put it on the ice in the cooler.

“I didn’t feel any pain," Jeff said. "I just wanted to make sure that I had my arm back. That was the one thing that I wanted.”

Pain and frustration

The hospital saved his life but sacrificed his arm. At first doctors tried to reattach his arm. But problem after problem arose. Five surgeries and 11 days later, the doctors conceded defeat. They removed the arm above the elbow.

Nothing had prepared Jeff for what was to come.

As difficult as life was to navigate without an arm, even harder for Jeff was handling the pain.

Not the pain from the surgery. Not the pain that coursed through the part of his own arm that remained.

The pain from the part of his arm that was now gone.

Once thought to be psychological in origin, phantom limb pain is now recognized by the medical profession as a neurological phenomenon — and a not uncommon side effect of losing any body part. Nerve endings at the point where the body part is cut off continue to communicate with the brain, tricking it into thinking the limb remains. For some, that sensation comes and goes.

For Jeff, it was pain, almost unbearable pain, most of the time. He felt like the hand he no longer had was on fire or pressing against nails or glass.

On many days, the pain was so intense that Jeff could not drag himself out of bed.

As he struggled to cope with a life without an arm he visited a specialist in prosthetics. But he soon realized that would not work. He hated the prosthetic, which felt clunky, awkward and strange. Best-case scenario, a prosthetic might help him open doors and shake hands. But it could not replace his arm. Making matters worse, the prosthetist joked about Jeff's lack of an arm, further alienating him.

Prosthetics may provide an alternative for many who lose a limb, but Jeff is not the only person for whom they do not work, experts say. Others also opt to go without a prosthetic for a variety of reasons. For some others, the level of injury or the status of the skin at the site of the amputation do not allow for a prosthetic device. Jeff could have persevered, but he decided that for him, no arm was better than a prosthetic.

Meanwhile, all the pills he took to manage the pain left him groggy and unable to function. He found himself slipping deeper and deeper into depression.

“Every day was just horrible,” he said. “I was just dropping lower and lower.”

Shortly after the accident, one of Jeff’s employees who had almost lost his hand after falling off a ladder told the Swedarskys about a surgeon in Baltimore. The employee, whose scars healed without a trace, sang the doctor’s praises and mentioned he did arm transplants. Focused at the time on Jeff’s immediate health, the family tucked away the name and did not contact him.

But later, as Jeff spiraled further into depression, Sharone remembered the conversation. Couldn’t hurt to investigate further, the two figured.

Jeff started looking into transplants and learned to his dismay that most programs only considered doing transplants for hands and maybe a little bit of an arm. Then he saw that the Johns Hopkins University surgeon his friend had recommended to him would consider patients for a transplant below the shoulder.

His arm could be whole again.

An emerging field

A surgeon in Ecuador performed the first hand transplant in the 1960s. This was before the field had developed the sophisticated antirejection drugs that are available now. Two weeks later, the patient rejected the hand. More than two decades later, in 1998, doctors in Lyons, France, performed a hand transplant on a prisoner, who proved not the most compliant patient. He, too, lost the hand.

The following year a University of Louisville surgeon performed a hand transplant on a man, who retains it to this day. The success of that operation spurred the field to do more. Early transplants in this arena were done on the distal forearm, just near the wrist.

Two years ago, the United Network on Organ Sharing, or UNOS, the nonprofit that oversees organ transplants nationwide, started overseeing vascular composite allografts or allotransplantation, transplants that involve several kind of tissues, such as hand, face and abdominal wall transplants.

Before 2014, surgeons performed 28 such operations performed, all but six involved hands, according to UNOS. Johns Hopkins University experts estimate that around the world about 85 hand and upper-extremity transplants were done. Since July 2014, UNOS has recorded nine such transplants done, four of which involved upper limbs.

Limb transplants require extensive commitment on the part of the patient — and not just with rehabilitation. They must stick to a tight regimen of antirejection drugs, known as immunosuppressives, to ensure their bodies do not reject the foreign limb. The medications can come with serious side effects, such as elevated blood pressure and cholesterol and osteoporosis.

Most transplant patients have to take these strong drugs. But most transplant patients receive organs, such as hearts, lungs or livers, that are essential for a person to survive. So ethicists have debated whether the benefits a person would receive from having a replacement limb outweigh the risks of taking these strong drugs.

Those who perform such operations, however, note that lacking a limb is not merely an aesthetic challenge. Patients may lose their ability to walk or work. Those for whom prosthetics don't work may become dependent on others to help with the simplest activities of daily life such as toilet care and dressing themselves.

“This is life-enhancing transplantation, whereas heart transplantation obviously is life saving,” said Dr. L. Scott Levin, vice chairman of the UNOS committee that deals with such transplants. “But there’s no question in my mind that this is a procedure and field that continues to evolve, continuing to demonstrate to the world that this is a wonderful opportunity for patients who are motivated and can undergo this with pretty good results in a lot of situations.”

One of the barriers for many patients, however, is price. Most insurers do not cover the cost of such surgeries. But that could change as the procedure becomes more mainstream, said Levin, chairman of the department of orthopedics at the University of Pennsylvania’s Perelman School of Medicine.

A novel approach

Dr. Jaimie Shores looked nothing like what the Swedarskys had expected. Just a few years older than Jeff, who is now 35, he walked into the room at the Johns Hopkins Comprehensive Transplant Center in Baltimore wearing scrubs and cowboy boots.

This could work, Jeff thought.

But Shores does not automatically accept everyone interested for a transplant. He and his colleagues at Johns Hopkins University are exploring ways to shift the ethical debate. In an effort to accustom a recipient’s body to the donated limb, the doctors infuse each recipient with bone marrow from the donor about two weeks after the transplant operation. They then can use fewer immunosuppressive drugs to guard against rejection.

“It’s a very novel and unique research study. Nobody else is doing that,” said Shores, clinical director of the hand/arm transplant program. “The reason we’re doing this, we’re not sure it’s an ethical thing to take a healthy person that is missing an arm and do this. We feel like we’re obligated for a nonlifesaving transplant.”

Shores has funding from the Department of Defense to test his theory that this will help reduce the amount of immunosuppressive medicines transplant recipients must take. Patients accepted into his study pay nothing to undergo the transplant, stem cell and bone marrow transfusion. Because many soldiers lose limbs in war-torn areas, the Department of Defense has a particular interest in exploring the best ways to address these injuries.

Eventually, Shores said, he dreams of developing a protocol for humans that would free them from requiring immunosuppressive medications all together.

While Levin praised the concept behind Shores's approach, he added, “the true efficacy of this has yet to be proven.”

That did not faze the Swedarskys. The two of them agreed to undergo multiple tests, both mental and physical as Shores vetted Jeff as a patient. The doctors suggested that with a baby on the way the couple might want to wait a year or so.

The Swedarskys persuaded the doctors they were ready to forge ahead.

'It will just blow their mind'

On Feb. 24, 2015, six months after Jeff embarked on the process, the program approved him to go on the waiting list for an arm transplant. The list had five other names. The wait for an arm, the doctors warned, could stretch anywhere from a year to five years.

Just knowing he was on the list changed everything. Where once Jeff had been reluctant to leave the house, now he deliberately headed out to restaurants and the grocery store that he knew he would frequent after the transplant.

“People will see me without an arm, and then someday I’ll come back and I’ll have an arm and I’ll want to see what they will say,” Jeff said. “Because it will just blow their mind.”

Jeff also wrote a letter to families of would-be donors, vowing that if given a limb, not only would he do all he could to ensure his own long-term success with it, he also would work to advance the field of transplantation for other patients in the future.

The day before the one-day anniversary of having his arm amputated, Jeff received a call: The family of a 38-year-old Philadelphia brain-dead man wanted Jeff to have his arm. Early the next morning Jeff went to the hospital.

He underwent 12 hours of surgery. When he woke up he looked at his left side. Instead of empty space, Swedarsky saw an arm, though a thicker and much hairier one than what he had had since birth.

“I looked down at it, and it was an amazing feeling. It was like it was back,” he said.

“I was made whole again. … It was like one of those magical feelings, like when I saw my boy for the first time or got married. And I knew it was the start of a long, long road back.”

The date was June 17 — a year to the day that doctors had severed Swedarsky's own arm.

For the next five weeks he remained in the hospital with his immune system depressed. He stayed in a room kept above 90 degrees to keep his blood flow going. His infant son could not visit. Adult visitors had to don face masks. Still, Jeff had a completely different outlook than half a year earlier.

“It was really tough, but with every step I sat there thinking we are going to get out of this and someday whether it’s three months, six months or one year, some day we’re going to look back at this and I will be myself again,” Jeff said.

Bit by bit his old self returned. Some pain remains, but it's different now.

“Since I still had a bit of phantom stuff, I tried to move my arm, my phantom elbow," he said. "And then I straightened my arm, and it turned into a real elbow. And that was one of the most amazing things I had ever been a part of.”

The Swedarskys spent two more months after the surgery in Baltimore, close to the doctor’s watchful eyes. Slowly, life started to return to how it was before the accident, before the year without an arm. Jeff went back to work and began traveling again.

One day this fall Jeff was flying to New Orleans for business. Air conditioning blew through the airplane cabin. Suddenly, Jeff noticed a sensation that he had not had for more than a year: His left side felt ... cold.

He still takes one medication twice a day to stave off rejection, as well as some pain pills to handle some of the lingering phantom limb pain. He no longer wears a splint, just a brace on his wrist to keep his hand from flopping around. Sometimes he doesn't even wear that. Bit by bit, he is feeling the nerves regenerate down his arm. Eventually, he knows they will reach his hand.

Even the small things delight him. He's back to being a "handsy" talker, just as he was before the accident.

"Each week everything gets a little bit better and you’re seeing yourself do things that you haven’t done in a long time," he said. "That alone is unbelievable."

Living for a year without an arm and then regaining one has been nothing short of surreal.

People, even those who had seen him without an arm for a year, would notice his healing arm and ask him whether he had been in an accident. He would tell them, Sharone said, and many would respond by saying, "Oh, it just looks so normal."

“Because who in their right mind thinks that somebody loses and then gets an arm back,” Jeff said. “It’s just this natural thing for you to not accept that happened.”

Call IndyStar reporter Shari Rudavsky at (317) 444-6354. Follow her on Twitter: @srudavsky.