After a heart transplant followed by a bout with lymphoma, Shaw Carter and his pharmacist have a relationship like one you would have with your barber or bartender.
The 22-year-old Gainesville man walks into Riverside Pharmacy like Norm from “Cheers” and greets Scottie Barton. The Gainesville drug store owner and his staff have been filling Carter’s prescriptions for his entire life.
Before his heart transplant less than two years ago, Carter swallowed 24 pills per day. Almost two years later, his prescription regimen is less than a third of that.
And in the past 22 months, Carter’s life has changed dramatically. The young adult has gone from living at home with parents as he recuperated from his transplant and battling cancer to living on his own at Young Harris College as a healthy man with the hopes of graduating next semester.
“A lot of people’s worst thing that happened in the past six months was ‘I failed a test’,” Carter said. “And that’s not a bad thing. I would like if that was the worst thing that happened to me.”
Battling two illnesses
On Dec. 31, 2013, Shaw Carter received a heart transplant after being diagnosed with hypoplastic left heart syndrome — a rare defect — at birth. The heart defect causes one of the three chambers of the heart to work improperly. Without intervention, the disease is fatal.
Shaw Carter was lucky. Three open-heart surgeries before his third birthday helped. But his health started to worsen in 2013. Then, one day before his 21st birthday, he and his family learned Carter would receive a new heart.
The family was elated, because Carter returned home 12 days after surgery. The joy was short-lived.
After starting with physical therapy in early 2014, Carter began exhibiting symptoms similar to mononucleosis in March.
“We thought it was mono,” Carter has said.
Doctors noticed his lymph nodes in his neck had grown and discovered he had post-transplant lymphoproliferative disease, a form of lymphoma affecting 8 to 10 percent of heart transplant recipients.
His doctors ordered Carter to undergo six cycles of outpatient chemotherapy. And when that treatment didn’t work, the then-21-year-old started six cycles of in-hospital chemo.
Following months of treatment, Carter’s scan of his chest came back clear in Nov. 12, 2014.
The Gainesville man finally had a clean bill of health.
Rebuilding his body and life
Signs of his healthy body started literally cropping up on his head. Carter’s hair started growing back particularly after the new year, he said.
“It came in colorless and depending on the light, it would look gray or any color, really,” Shaw Carter said.
Shortly after that, Shaw Carter entered cardiac rehabilitation to rebuild muscle tone and gain strength.
“I was feeling the burn on 2-pound weights,” he said. “But to be fair, I didn’t have like any strength whatsoever when I started.”
Such strength came in handy when the Young Harris senior started his bowling class, adding 40 points or so to his average game.
Carter enrolled in the class after returning to Young Harris’ campus in August. The business and public policy major was living at home while undergoing treatments.
He plans to complete his degree and graduate in May.
But another big goal on Carter’s physical ability checklist is participating in a 5-kilometer run, he said.
However, Carter knows none of his physical benchmarks would be possible without the donation of one anonymous family.
Giving thanks and giving back
During the first week of January, the Carter and his parents, Doug and Sandy, mailed a letter to the heart donor’s family. The typed letter updated them on Shaw Carter’s health and expressed his gratitude.
For privacy reasons, the letter first goes to the transplant coordinator before being mailed to the family.
“It kind of stresses the importance of being an organ donor and that if not for their family member, I would not be here today,” Shaw Carter said.
He said he hasn’t heard from the donor’s family but would like to meet them if the feeling is mutual.
With a healthy heart and body, Carter has evolved from patient to mentor in recent weeks for a 9-year-old with a mirror-image medical history. Phillip Bronco Reese, a Children’s Healthcare of Atlanta patient, was diagnosed with post-transplant lymphoma following a heart transplant.
“Bronco I think is quite enamored with Shaw, and Shaw has been like a big brother to him,” Shaw’s father Doug Carter said.
Communicating through text messages, Shaw and Bronco often discuss medications and experiences related to the cancer.
“He was really bummed after he had his transplant because he wants to get tattoos,” Shaw Carter said, explaining transplant recipients taking immunosuppressant medications are told to avoid getting tattoos because of the risk of infections.
His own treatment experiences, as well as his work with Bronco, have found their way into Carter’s school work. He said his his senior project will focus on corporate philanthropy, a subject he hopes to parlay into a career at Children’s Healthcare of Atlanta.
“I’m looking at to what degree do shareholders benefit from corporate philanthropy and why corporations give money to nonprofits,” he said.
But his plans after graduation are undecided at the moment. Carter said he is weighing his options on entering the workforce or attending graduate school.
Relaxing family atmosphere
Shaw Carter is not the only one who experienced a 180-degree change in lifestyle. Since he was cleared of the lymphoma and returned to college, time with his family is less tense, the family said. The Carters usually riff and rib each other when gathered together.
“You can tell just by probably our mood from how different it was a year ago to today,” Sandy Carter said.
After years of doctor’s appointments, scans and bated breath, Doug Carter described it as a blur.
“You are just doing what you can, day to day, to survive, to make the best of what life is throwing at you,” he said. “Looking back at 2014, we were truly as a family in survival mode, because we never knew from one day to the next.”
And now with all of the Carter children out of the house, Doug and Sandy Carter are official empty-nesters.
“I can tell you this fall, once we dropped him (Shaw) off, we were high-fiving it back down the mountain,” Doug Carter said. “We are truly empty-nesters. They’re happy and healthy.”
“Next day, renovations on the kitchen,” Shaw Carter interjected.
“You’re lucky you still have a room,” Doug Carter said teasing his son.