You’d never know they were connected.
Not just from looking.
There’s Alonzo Mourning, a literal giant of a man.
Six feet, 10 inches tall. Somewhere north of 250 pounds. A retired NBA All-Star who played for 16 seasons and won a championship with Dwayne Wade, Shaquille O’Neal and the Miami Heat.
And there is my son, Wayne Washington II.
One of my older brothers calls him “WWII,” and, while he was certainly a handful as a little boy, there is nothing warlike about him now. He’s 5 feet, 11 inches and about 128 pounds. He’s a tremendous basketball talent, too. However, his exploits only can be judged on a PlayStation 3 system, where he is appropriately known as ViperBoy.
The imposing, athletic Mourning would seem not to have anything in common with my son. Oh, how I wish that were true.
Mourning, who visited Columbia last month, has kidney disease.
Just like my son.
If eight people jam into an elevator in South Carolina, one of them probably has chronic kidney disease.
That’s more than 500,000 South Carolinians. It’s that common.
According to the National Kidney Foundation, South Carolina ranks third per capita in the number of people who require dialysis.
Stunning diagnosis
Truth be told, I was angry at Wayne.
It was summer 2007, and we were taking his cousin to Winthrop University, where she was a student.
Wayne, 13 at the time, complained of feeling bad. It was one of those ill-defined complaints parents recognize as more excuse than anything else.
Taking his cousin to college would mean an hour-long drive in the minivan, and I figured he just didn’t want to go.
I figured wrong.
A doctor later told us Wayne probably had some type of upper respiratory bug. He was wrong, too.
A few days went by, and Wayne, excited about the beginning of a new school year, said he felt better.
A few days after school started, Wayne threw up in history class at Blythewood Middle.
My wife, Shelia, went to get him from school. I still wasn’t convinced anything was seriously wrong, but I met Wayne and his mother in the parking lot of an urgent-care office near our home.
Wayne didn’t make it to the office door before throwing up in the parking lot.
“He threw up in the van on the way here,” Shelia told me.
We decided we should take him to Providence Hospital, just down the interstate.
By now, we were deeply concerned.
Shelia gave Wayne a plastic bag and, every 15 to 20 minutes, he vomited.
After an hours-long wait to see the doctor, we were told Wayne probably had some type of bug. A few tests would give us an idea of what we were dealing with and how it should be treated.
Wayne, hunched over, was sitting at the edge of a table in the examining room when the doctor came in with his results.
“Your son is Wayne Washington II, right?” the doctor asked in a confused tone.
“Yes,” my wife and I said.
“Um, we did a creatinine check – that’s a measure of kidney function – and it shows that Wayne is in kidney failure,” the doctor said. “We’re going to transport him to Palmetto downtown. They’ll have a pediatric kidney specialist who can give you a better sense of what’s going on.”
We were too stunned to ask questions. And with Wayne still throwing up, we wanted to get to the next hospital quickly. Whatever was going on, I wanted to get Wayne to someone who could make it stop.
It was days later when we all learned what was making Wayne so sick.
He was indeed in kidney failure.
Dr. Robert Holleman, whose calm and upbeat demeanor had soothed us some in those first few days, told us Wayne had something called focal segmental glomeruloscleroris, collapsing variant.
“This is not good news,” Dr. Holleman said.
A night of tears
We reporters pride ourselves in knowing a little something about everything, but I had never heard of FSGS.
Holleman explained it was an aggressive form of kidney disease. It is not well understood. And, in most cases, it leads to total renal failure in less than two years.
Wayne most likely would require dialysis and, eventually, a transplant. In many cases – anywhere from 30 percent to 50 percent – FSGS returns to attack the new organ.
We were shocked, confused and hurt.
How could this happen?
Why?
Just a few weeks before, Wayne had tried out for the junior varsity football team. He had been among the last cuts. We were both sorry he didn’t make it, but I let him know that I was proud the intense heat and the endless running hadn’t made him quit. He had given it his all.
If he was healthy enough to run around outside with other kids in August, how could he, weeks later, be in kidney failure?
That night, I got on my computer to learn what my boy was facing. Holleman had expressly told me not to scare myself, but that’s exactly what I did.
Mourning, the basketball star, had the same illness. So did Sean Elliott, another hoops star.
But those guys were world-class athletes. They were rich. They’d have access to the best of everything.
I stayed up nearly all night, reading scientific texts and studies. And crying.
Shelia was downstairs in the bedroom. When I came down, I saw that she was crying, too. Upstairs, it was dark and mostly silent, save for some movement in the room of Wayne’s big sister, Ashley.
She was probably awake, and she was probably crying, too.
I thought of Wayne. My namesake. My boy. Some weeks before, he had told me he wanted to get his hair cut so he’d look like I did when I was younger.
He would smile if relatives told him he looked like I did when I was his age.
Every two weeks, we’d go get our hair cut, just us two. If the weather was nice, we’d put the top down on my Mustang GT. I’d let him find the rap music he likes on the radio, and he’d turn it up loud.
We’d talk about girls, money, school, sports, clothes. Everything.
If I always seemed to be barking at him about something – pushing him – haircut Saturdays were fun.
Father and son time.
I thought of all of that.
There was no sound from Wayne’s room as I cried myself to sleep.
Dealing with fear
Some of those 500,000-plus cases of kidney disease are on us.
Poor diet and excessive weight lead to high blood pressure and diabetes, which, in turn, often lead to kidney problems.
But sometimes, kidney disease strikes for no apparent reason.
Kidney disease takes a wrenching physical and financial toll.
Mourning knows that.
That’s why he was in Columbia late last month, pushing for legislation that would make it easier for South Carolinians to afford care.
I got a chance to meet him after he spoke to legislators at the State House.
His schedule took him to a dialysis center on Taylor Street with which my family and I have painful familiarity.
Mourning, dressed in an immaculate dark blue suit, strolled in quietly. He shook the hands of nurses and staff before heading to a well-lit room where, for several hours at a time, three times a week, patients were being dialyzed.
There were no screams of recognition; the big man seemed not to expect that.
He had the good grace not to make a speech.
Instead, he quietly went from chair to chair, talking softly, nodding, looking people in the eye as their blood was pulled from their body, cleaned and restored.
He lingered with a few people.
Learning that I was interested in writing about his trip here and learning as well about my son, he had said he wanted to meet me.
After his meeting with patients, he and I sat in a small conference room.
“If I was you, I don’t know that I wouldn’t be on South Beach right about now,” I told him.
“Nah, the golf course,” he said. “If I was out just having fun, it would definitely be the golf course.”
“So, why do this?” I asked.
“Because it’s the right thing to do,” he said.
Mourning, who had a successful transplant in 2004, told me a story of how he went to a pharmacy near his home in Miami to pick up his medications.
It was a monthly supply of one of the many drugs he needs to keep himself healthy.
“That box cost $1,000,” Mourning said. “I had medical coverage. I had all of the resources. I said to myself, ‘How do people afford this?’
“There’s no way.”
No, I thought, there often isn’t.
My mind flashed to our beautiful home in Blythewood and our now urgent need to sell it. It raced to images of my wife sorting the stacks of bills and trying to figure out which creditors to pay and which ones will have to wait.
And, comparatively speaking, we’re lucky. Ours is a two-income home. I have health insurance through my job.
Still, we feel like that character in “Jaws” who is sliding on the deck of his tipped boat into the waiting mouth of a shark.
Mourning signed basketballs as he spoke.
He told me about his dietary changes. No table salt. No red meat. Lots of fish and leafy greens. Plenty of water. Only the occasional glass of red wine.
Mourning was a towering, elegant picture of vibrant health.
But money and fame, size and strength can’t make a man shake off what I know must haunt him on bad days.
“How do you deal with the fear?” I asked him. It was a question for me, for my family. “How do you deal with the fear that it will come back?”
“You know, I live by faith,” he said. “I have a tremendous amount of faith.”
Soon, it was time for him to go. Nurses and staff posed for pictures with him.
Journalists don’t hobnob. We don’t stargaze, and we don’t ask for autographs.
And yet, when a staff member asked if I wanted to take a picture with Mourning, I told her I did.
I know someone who’d like to see that picture. He’d like that very much.
Acts of kindness
The months from the fall of 2007, when Wayne was diagnosed with FSGS, to the fall of 2008, when he was placed on the transplant list, were a daily dose of intense pain and awful worry.
Holleman tried to enroll Wayne in a study for medications that, it was hoped, might forestall the disease. While he was enrolled in the study, the meds would be free.
But Wayne got too sick too quickly. No study for him.
He was put on steroids, and his face bloated. It matched the bloating everywhere else as his body, robbed of proper kidney function, retained pounds of fluid.
He rarely urinated.
His weight soared from the low 140s to the 160s.
His sneakers didn’t fit. I bought him new ones, but few size 15s are stylish.
By March, he needed to have a kidney removed.
When he was well enough to leave the hospital, we underwent dialysis training on Taylor Street, in the same building Mourning later would visit.
The training took a week.
We – mostly, I – arrogantly had assumed it didn’t need to take that long.
“Who needs to learn how to wash their hands?” I wondered.
But since we had decided to dialyze Wayne at home every night, cleanliness was critical.
Our trainer was blunt and demanding.
My ego was popped like a birthday balloon.
Like my son, I was almost always angry at everything.
Kindness carried us.
A friend offered to donate an organ to Wayne. Her obvious disappointment when she learned she was not a match touched us.
Co-workers made it clear they cared about me and my family. They picked up assignments I couldn’t handle because I was out with Wayne. They occasionally cooked a meal and stashed it in the refrigerator, having no firm grasp on how wonderful it was not to have to cook dinner that day.
My co-workers raised enough money for me to buy Wayne a much, much coveted PS3 system.
We only briefly were tempted to spend the money on bills.
Former co-workers, dear friends from Minnesota, sent gift boxes for Wayne. Particularly cherished were games and a pair of matching Sidney Rice Minnesota Vikings jerseys, as Wayne was born in Minneapolis and is a fan of that team and the University of South Carolina. He and I had been in the stands, cheering, in 2006 when Rice broke the school record for touchdown catches in a single game.
Teachers, students and administrators at Blythewood Middle raised money so Wayne could get a laptop computer. They dedicated a special award in his honor and gave it to him on the last day of school.
Shelia and I cried as they read a statement about his courage and presented him with the award.
But Wayne kept deteriorating.
Dialysis helped with the fluid retention, though we found it extraordinarily difficult.
Wayne often would have to go to bed as early as 7 p.m. in order to complete the dialysis early enough to get dressed and catch the school bus.
The dialysis was a detailed process. Fortunately, we had been taught well by the folks at FMC Midtown Dialysis on Taylor Street.
A catheter had been placed into Wayne’s belly when he’d had the kidney removal surgery.
It had to be taken care of properly, lest he get a painfully debilitating infection called peritonitis. We also could give him peritonitis if we didn’t wash our hands properly and wear masks as we prepared the dialysis machine and hooked him up to the bags of fluid that would attempt to do what his remaining kidney could no longer get done.
The dialysis would be performed in cycles, and he’d be hooked up overnight.
For reasons we never understood, that first cycle, when it was time for the machine to pull the fluid through the tube and out of his body, often hurt.
Wayne would grit his teeth and ball his fists to bear it. Shelia and I, who took turns hooking him up, would sit with him for the first cycle or two.
By the fall of 2008, Wayne had begun to complain of intense stomach pain. Nausea, cramping and diarrhea would come in waves.
Holleman consulted colleagues, asked other experts at medical conferences and still couldn’t nail down exactly what was wrong. Wayne’s symptoms were not typical, the doctor said.
We had learned to trust Holleman. He had not batted an eye when we told him, early on, that we wanted to travel to Duke Medical Center to get a second opinion on his diagnosis.
He had said he would hope, for Wayne’s sake, that his diagnosis was wrong.
It wasn’t.
We knew Holleman had our back. We knew he was doing everything he could to help.
But he and just about every other medical expert we encountered told us Wayne simply needed to get a transplant.
His weight had crashed into the low 90s. Each month would bring eight to 10 days in the hospital. He was so weak and so frail, I would carry him from the car to his bedroom upstairs after hospital stays.
Shelia and I rarely acknowledged what we both greatly feared: Wayne might die; we might go to sleep with a son and wake up without one.
Kidney disease doesn’t kill this way, not usually. But I knew the weight loss, the intense pain, couldn’t be endured for too much longer.
Thankfully, it didn’t have to.
The transplant
Early on the morning of Dec. 1, 2008, I got a call on my cell phone from the Medical University of South Carolina, whose transplant team had Wayne listed.
We had been told to be ready for such a call at any time. And we had endured false starts before, calls that didn’t lead to a transplant for a variety of reasons.
But this call was the one.
My old Mustang had been giving me problems and, before I knew how high the mountain of bills would reach, I traded it in for a newer one.
I woke Wayne up, unhooked him from the machine and we climbed into the ‘Stang.
Shelia and Ashley would pack more things and follow later in the van.
I tried, mostly without success, not to speed on the way to the hospital. It was still dark but wouldn’t be for much longer.
Wayne was remarkably composed, excited even. We talked the whole way.
He told me he could endure what was coming if it would give him a chance to be pain- and machine-free.
I told him what I had meant to tell him so many times in the months before. I told him I loved him, that I was proud to be the father of such a tough, determined son.
Wayne honored that love and pride in the next few days.
MUSC’s transplant team was amazing. They answered every question, took us through every contingency.
But it was Wayne who stunned us most.
The night of the transplant, a nurse had told him he would have to get out of the bed and walk around some the next evening.
In intense pain, Wayne rudely told her he would do no such thing.
He was gently admonished by Shelia’s parents, who had come to sit with him. The nurse seemed to understand.
She was in the room the next night when Wayne, as ordered, got up and walked around his bed.
I had stayed with Wayne the first night, and Shelia was with him on this night. She called and told me I never would believe what Wayne was doing at that moment.
More tears.
Two days later, Wayne walked, unassisted, out of the hospital.
My aunt, who always teases him that he looks like I did when I was his age, threw a monster party for him at her house in Summerville.
It’s been a year and three months since Wayne underwent a kidney transplant.
His weight is a little down. It’s in the high 120s, and Shelia and I, no doubt scarred by the fear of what he has been through, would be happier if we could find a way to get him heavier and stronger.
But we’re grateful. Very, very grateful.
Kidney disease doesn’t always turn out this way. We know that, just as we know that this is a story that is not yet over.
Wayne is in the 10th grade. He is a good student and a better son.
He could be heavier, but he’s healthy.
He enjoys shooting baskets in the gym near our home, though he won’t use the ball he just received, the one with Alonzo Mourning’s signature on it.
When the weather warms, I’m going to drop the top on the ‘Stang, and we’re going to ride out.
Some rap song will come on the radio, and Wayne will blast it.
I can’t wait.
Reach senior writer Wayne Washington at (803) 771-8385.
http://www.thestate.com/2010/04/04/1226841/teen-fights-harsh-battle-with.html
