After life-changing heart transplant, young Fargo man now fights paralysis complication
Damian Lozano-Johnson, 18, a student at Fargo North High School, received a new heart on Oct. 13 at a Chicago hospital, where he developed paralysis afterward.
FARGO — A young Fargo man who’s dealt with a heart defect since birth should be embracing a brand new life with a strong, newly transplanted heart beating in his chest.
Instead, he’s lying in a hospital bed, faced with a complication that could prove far more difficult than the transplant recovery.
Damian Lozano-Johnson, 18, is suffering from a rare and unexpected paralysis that set in after the Oct. 13 transplant.
His mother, Shari Johnson, has been away from their Fargo home and with her son at Lurie Children’s Hospital in Chicago since late July, while Damian was tested and prepped for the possibility of a transplant.
In a phone interview with The Forum, she shared her frustration with the setback.
“He should have been out of the hospital within two to four weeks…now we have no idea when he's even going to be medically stable enough to start physical therapy,” she said.
Dr. Philip Thrush, a pediatric cardiologist at Lurie Children’s, manages young patients before and after heart transplants.
He said this paralysis complication has never happened in the program, which dates back to the early 1990s. In talking with pediatric and even adult transplant colleagues across the country, Thrush said they haven’t seen it either.
Damian was born with a congenital heart defect, in which his heart valves didn’t form correctly.
Shari said her son waited nearly four years in continuous heart failure for the transplant, which would be his fifth open-heart surgery.
He has previously had both a donor heart valve and a mechanical heart valve, the latter of which emitted a clicking sound audible to him and others around him.
That sound is gone, replaced with a disease-free donor heart that’s performing as it should.
“It's awesome. I bawled when I listened to it for the first time,” Shari said.
Though the rare paralysis is by far the biggest drawback, Damian is slowly improving, making small movements with an arm and hand, and can lift his eyebrows and smile.
While Shari stays by her son's side, Damian’s dad travels back and forth from his home in Omaha, Nebraska as often as he can.
Ron Lozano tries to work as many hours as possible at his truck driving job to help support Shari and Damian financially.
He’s married to Lisa Gibson, who Damian calls his “bonus mom.” She has set up a GoFundMe account, with all donations going to help support Shari.
The biggest challenge for Damian could be finding the fortitude required for a long road of rehabilitation.
“His whole life has kind of been about overcoming obstacles so far, and he’ll overcome this one too,” Gibson said.
'Running the halls' beforehand
Damian was only a year old and living in Virginia with his parents when he had his first surgery.
After his parents separated, he and his mom moved to Texas, where his second surgery occurred.
Shari, born and raised in Fargo, moved back here to enroll Damian in kindergarten, and around age 7 he had a mechanical valve put in his heart at Children’s Minnesota Hospital in Minneapolis.
In Fargo, Damian went to Roosevelt Elementary, Ben Franklin Middle School and Fargo North High School.
He switched to online studies after just one year of in-person classes at North, however, because of his compromised immune system and because heart failure sapped his energy.
He still has a few credits left in order to graduate, his mom said.
Over the years, Damian was considered for a transplant at Children’s in Minneapolis, but his antibodies were too high.
Lurie Children’s, which specializes in high-antibody transplants, has averaged 28 heart transplants a year in the last five years, making it a high-volume center.
“We have the opportunity and I think the obligation to do high-risk transplants because smaller, lower-volume programs maybe can't take on that risk,” Thrush said.
Shari brought Damian to Lurie Children's for an evaluation in June and they returned in August, when he was admitted for treatments involving his antibodies and to manage his heart failure.
In the two months before the transplant, his mom said Damian was “running the halls” of the hospital and joking with doctors.
Thrush said Damian’s unique sense of humor, combined with his matter-of-fact approach and resiliency, says a lot about how he was raised.
“Those are all qualities that are going to serve him well… as he moves forward,” Thrush said.
In Chicago, Shari was staying at either the nearby Ronald McDonald House or in Damian's hospital room.
She hadn’t been back to Fargo for months but with the weather getting colder, decided to return to check on her house and retrieve her and Damian’s winter weather gear on Oct. 12.
The hospital staff jokingly warned her that as soon as she left, she’d probably get the call that a donor heart had become available.
That’s exactly what happened.
Soon after pulling into Fargo following the 11-hour drive, Thrush called her with the news, which left her screaming with joy.
“I literally threw my tubs of winter stuff into suitcases, shoved it back in the car and I was on the road again,” Shari said.
Lozano and Gibson grabbed a flight to Chicago in time to spend a few hours with Damian before surgery.
Meanwhile, Thrush dressed up in costume to give Damian the news that he was about to receive a new heart, something he does for many of his patients.
He wore a full knight suit, with helmet and visor, and for effect, carried his lunch box, which says “human organ for transplant” on the side.
“I’m not gonna lie, it’s fun for me too,” Thrush said.
Shari arrived back at the hospital in time to see the vehicle carrying the actual donor heart as it pulled into the ambulance bay.
She told Gibson how she had now experienced both sides of the process.
Her mother was a designated organ donor when she died nearly eight years prior, and Shari hoped family members of those who received her organs had felt the same way she was feeling.
“It's so overwhelming to know that your loved one is going to have a chance at life, knowing that somebody else has lost theirs,” Shari said.
Shari said the main thing she wants others to take from her experience is to be grateful if they don’t have to walk a medical path.
“All of those little arguments and frustrations, most of them mean nothing in the grand scheme of things,” she said.
Improving in small steps
The transplant itself on Oct. 13 went well and doctors expected Damian to begin waking up a few days after surgery, but days went by and he didn’t.
On day nine, when he finally opened his eyes, they realized he couldn’t move and was terrified.
At certain points, his blood pressure crashed and he developed infections and breathing problems, leading to two hospital “code blue” alerts.
“You never want to see doctors running into your child's room,” Shari said. “After that happened, I realized how scary this was for him as well.”
Specialists at the hospital think Damian suffered from critical illness neuromyopathy, a systemic inflammatory response affecting his muscles and nerves.
Thrush said they don’t know if the effects will last weeks, months or even longer.
“But the fact that he is gradually improving every week is a really good sign,” he said.
Also, an MRI showed Damian had suffered a stroke at some point after his transplant.
It was not related to the paralysis, but is one more hurdle in his recovery.
As soon as Damian is medically stable, the Shirley Ryan AbilityLab just blocks from Lurie Children’s has agreed to take him.
The hard work for Damian there would be like a full-time job, with 40 hours a week of therapy.
He’s looking at two to four months of inpatient care there, and at least six weeks of outpatient care.
For now, Shari is marking the small steps of progress, crying every time he’s able to do something new. He's almost doubling what he was able to do the day before.
She hopes that in time, he’ll blow therapy expectations “out of the water.”
“I would love for him to prove everybody wrong,” she said.