Two heart transplants not slowing teen down

July 24, 2015 by Christin Nance Lazerus, Chicago Tribune

Ryan Brown refuses to let his medical challenges limit the possibilities of his future.

"You have scientists and statistics that say it's very rare to get a second transplant, and it is," Brown said. "But it's very rare to be not normal, and being not normal - whether you're autistic, or you have ADHD, or any problem; yeah, its a crutch sometimes. I do push it to the limit - it should also motivate you, uplift you to say 'I might as well show everybody else what I can do.'"

The 18-year-old Hammond, Ind., resident has undergone two heart transplants - most recently in May - but with the help of some dedicated teachers and staff at 21st Century Charter School, he was able to catch up with his school work and is on track to graduate next year with college credits.

"I kind of feel like settling for GED is a failure, a cop out," Brown said. "If I can do it, I can do it. Medical restrictions shouldn't be an excuse to drop out and get a GED."

Brown was always an excellent student, according to his teachers, but his journey has helped him mature and crystallize what he wants to do with his life.

"Kids like Ryan are what make the job so rewarding," said Charlie Swanson, Brown's anatomy and physics teacher, who has become a member of the family.

Brown hopes to take enough dual credit courses this year to attain an associate's degree from Ivy Tech Community College alongside his diploma before heading to Purdue University in West Lafayette to study biomedical engineering. He wants to develop heart devices, like the Impella Pump that he received not long before his second transplant. He credits much of his development over the past year to the support of fellow patients on the list at Northwestern Memorial Hospital in Chicago.

"Being 18 and I was around men who were 67 years old, 54 years old and 40 years old, who said you know whether I make it or not I've lived my life," Brown said. "Now I have 90 percent of my heart, and I feel like it took the extra 10 percent from my old heart.

"And what's going to stop me from being what I want to be?"

'FROM DAY ONE, HE'S BEEN A FIGHTER'

For a kid that was "born blue," it's remarkable that he made it out of the hospital the first time. Brown was born premature with a congenital heart defect and underdeveloped lungs, according to his mother, Tasha Jetson.

"They didn't bring him to me in a timely manner, and they told me a technician is looking at his heart, which formed on the wrong side," Jetson said.

He underwent a heart procedure when he was only 3 days old, but he was eventually released from the hospital and would have regular checkups every six months.

A bout with gastroenteritis at age 12 sent him to the emergency room, eventually triggering congestive heart failure and sending him to Children's Memorial Hospital in Chicago on June 9, 2010.

"The doctor said, "Mom, where he's at, it's severe and your child will not leave this hospital without a heart,'" Jetson said. "His heart was no longer squeezing enough; it was a stiff heart."

Brown was officially placed on the transplant list on June 21, 2010, and received his new heart six days later.

"I'll never forget," Jetson said. "I was at Dollar General off Calumet with two of my boys when I get a phone call. I was at the register, trying to grab some snacks, and my husband says 'we've got a heart.' I dropped everything and started screaming."

Jetson said the new heart presented positive physical changes almost immediately.

"When he came out, I showed him in the mirror what had happened," Jetson said. "See he had been born blue, but now his lips were red, when they had always been a funny purple color."

But Brown wasn't out of the woods yet. He was admitted to the emergency room one month after the transplant.

After his transplant, Brown decided he wanted to attend school with his cousins at 21st Century Charter School.

"21st Century has always felt like a family," Brown said. "Even though I had those who didn't understand, who turned to childish games, childish mimics, at the same time, you knew some people had your back and would fight with you."

Jetson said the school has always monitored Brown's health closely, including calling an ambulance twice when he complained of shortness of breath.

"He always had bouts of rejection with first heart; his biopsies were never clean," Jetson said.

But he tried to be like other kids, including playing middle linebacker on the football team.

"God gave me a jacked-up heart to show people that you can have the worst medical symptoms, the worst medical life, the worst outlook, the worst experiences, but the thing that stops you from being great is yourself," Brown said. "So what did I do with a jacked up heart? I played football. Was I supposed to? Heck no.

"But at 13, you don't really see the effects of what you're doing. My mom and dad and family see the effects of it."

Last winter, Brown caught a stomach virus that triggered his second bout of . Even though he was 17, doctors transitioned him to Northwestern's transplant floor because he was physically an adult. But that meant doctors now directly communicated with Brown, rather than talking mainly with his mom, which took some getting used to.

The wait for a heart was longer this time - nearly three months after he was admitted - and there were some dark moments for him and his family.

Brown found his solace in a support group with six other men stuck in the same situation - waiting for a heart.

"The first transplant was more of a family thing, and I had (mom) there," Brown said. "This time, you really were by yourself most of the time. You had to come down to get to know others who are going through the same thing, otherwise it was like sitting in a jail cell thinking about it all the time."

They all talked about getting a heart by June, and for Brown and four of the men, that came true. But the 67-year-old cheerleader of the group - a man named Tom - died not long after receiving his heart. Brown said it was hard to lose his friend, but Tom serves as a continual inspiration.

"I'm not going to die; I'm going to fight because of Tom."

In an effort to keep his spirits up, Brown's mom wrote an impassioned e-mail to teachers and administrators at the school, so he could transition to a homebound student in an effort to keep his spirits up.

Swanson - who Jetson calls her adopted son - lived near the hospital and visited him to start setting up what Brown needed to study and learn remotely. Teachers provided materials and he would even participate in class via FaceTime.

"I've never seen more grit out of a kid - to be able to stay awake and sit in a chair when he's constantly being poked and prodded," Swanson said.

Swanson said that Brown's maturity has always been evident, but being treated like an adult at Northwestern really hastened his development.

"What's astounding about Ryan is he already had an adult mindset, it was all a matter of tapping into that," Swanson said. "He never once asked for us to make it easier for him.

"He doesn't appreciate the immaturity of some of his classmates. He says that they don't understand what it is to be healthy."

Brown's AP English literature and composition teacher Melissa Culbertson said he never asked teachers to take it easy on him.

"He was bar none, my top student in class," Culbertson said. "When he went into the hospital, we were reading 'Invisible Man,' by Ralph Ellison, but he was so passionate about the book that he continued to read it and work diligently."

Brown received his on May 15 - Culbertson's birthday - which she says was "the best birthday present ever." During his recovery, his feet and legs swelled up during a bout of pancreatitis, but in late June, he was finally cleared to go home.

The family now faces another challenge as the house that they've rented for several years is being sold at a Lake County Sheriff's auction on Aug. 7 for unpaid back taxes.

"We looked into seeing if we could negotiate a purchase price and see if we could keep the house, but because a broker is handling it, they usually don't come down on price," Jetson said.

"But whatever happens, life has to go on."

Brown is now more cognizant of what he needs to do for his health going forward - taking medications, drawing blood to monitor his kidney levels, walking regularly, and resting when he feels tired - but his dedication to staying on track academically hasn't waned.

The day after he returned home, Brown started working from Culbertson's classroom to catch up on his credits.

"Now, he's almost always parked at the computer in my class. He has a level of focus that I wish I had. He'll sit there for four hours and I have to ask him, do you want a snack, are you feeling OK?"

Brown knows that the odds were stacked against him living this long and may continue in his life, but he's confident that he will make his own road.

"They tell me I'm going to die; I assume that I'm going to live," he said. "Statistics say that I won't graduate because I'm black; I'm going to graduate and not only graduate with a diploma but, oh yeah, a two-year associate's degree. So the reality is life is what you make it."

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