A week ago Robert Perry-Nichols had to write everything because he couldn’t talk with the feeding and breathing tubes in his throat. But that’s better than a month ago, when he couldn’t even breathe.

Now the 18-year-old is both talking and breathing, thanks to a double-lung transplant performed at UPMC Presbyterian Hospital on Feb. 11. It was the first such surgery performed there on a sickle cell disease patient.

STRONG COMEBACK—Mike Nichols, left, talks with his son Robert Perry-Nichols as he recovers from receiving the first double-lung transplant ever given to a sickle-cell patient at UPMC Presbyterian. (Photo by Christian Morrow)

“When I first got out of surgery, I couldn’t move anything but my arms just a little,” said Perry-Nichols. “Last night, I walked by myself for the first time since. I went down to the kitchen and made some hot tea and got some ice.”

But just getting to that point was a trial. After 10 hours of surgery and two weeks in intensive care, Perry-Nichols finally moved to a room on the transplant floor, but fluid began to accumulate in his new lungs and he returned to intensive care.

“I was all gowned up with a mask and watched as the doctors cleaned out his lungs. It was amazing, he’s an inspiration to other sickle cell kids,” said his father Mike Nichols, a driver for the Pittsburgh Department of Public Works. To have come through this—he’s made history. He doesn’t have to use an oxygen machine anymore. He can live a normal life.”

Nurse Nicole Betz said his treatment and recovery are on course, and he should be released soon, possibly within a week.

“He’s been a very good patient. He’s a great kid,” she said.

Though Perry-Nichols’ surgery is the first of its kind performed at UPMC Presbyterian, Andrea Williams, executive director of the Children’s Sickle Cell Foundation Inc., said transplants are becoming more common as a treatment, because, unfortunately, there are few others.

“Depending on where the cells change, it can affect any area or organ in the body, Robert’s was in his lungs,” She said. “Marrow transplants are almost routine now. There’ve been about 600 transplants. But there’s only one drug being used to treat sickle cell—and it was discovered by accident. So we need more research.”

Williams said vitamin therapy, which has proven successful in treating cystic fibrosis, shows promise.

“I’d like to see a specific vitamin like they have for CF,” she said. “Nutrition is very important. But Robert’s transplant is a great step forward. It gives us hope.”

But Perry-Nichols isn’t really concentrating on nutrition just yet. When his breathing and feeding tubes were removed last week, he still had to pass a “swallow test” to make sure food and drink were heading to his stomach and not his new lungs.

“I passed that, but they wouldn’t let me drink any thin liquids. They gave me this stuff to mix in water or juice that thickened it up,” he said. “It was nasty.”

But when he was allowed to eat solid food, the first thing he wanted was Swedish Fish and Starburst candies. On one shelf in his room are two large bags of each that his mother Wendy made sure he had.

“She’s really been great through this whole thing,” Nichols said of his ex-wife. “She works long hours, but she gets here from McKeesport as often as she can. I’m in Bloomfield so it’s easier for me to get here every day. And my priority right now is seeing he gets through this. I’m proud of him. And it’s also nice that this happened during Black History Month because I read Black History to kids in the Pittsburgh Schools. He is Black history.”

Perry-Nichols is somewhat conscious of his unique status, but he isn’t dwelling on it. He’s thinking about what he’ll do when he gets out of the hospital.

“I want to go to the mall, hang out, buy some clothes,” he said. “And I’ve got my permit, so I want to do some driving this summer.”

Beyond that, he said he’ll take it as it comes.

“I don’t know what his plans are now that he’s graduated,” said Nichols. “But at least now he can make plans.”

(Send comments to cmorrow@newpittsburghcourier.com.)

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