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Shelby's Story

Story by Linell Smith

Shelby Fletcher waits for transplant surgery
Shelby Fletcher waits for transplant surgery.

Shelby Fletcher is darn good at the art of surviving. At 31, he has already lived through more operations than birthdays.

As he waited recently for the surgery that would bring his third donor kidney, he realized how much he was looking forward to the anesthesia.

The week of preparing for a transplant at Johns Hopkins Hospital had proved rough. There were long sessions of dialysis and plasmapharesis, a blood filtering procedure unavailable at hospitals near his home in Texas. Next, the treatment access line implanted under the skin in his arm had failed, forcing his doctors to insert a central line into his neck.

 Add heavy-duty antibiotics for the fever that appeared suddenly, the physical exhaustion of the plane trip from Fort Worth and the anxiety of wondering whether the complicated kidney swap would actually occur.

This time luck had brought him to one of the country’s premiere transplant surgeons. Dr. Robert Montgomery is known for his skill at handling the toughest cases, people like Shelby who bring lots of kidney-rejecting antibodies and thick layers of scar tissue from previous transplants.

 It was Valentine’s Day. The young Texan knew a kidney awaited him, a beautiful, healthy match from a woman he had never met.  As he shared time with his family, the hospital room filled with optimism.

So what’s the first thing you’re going to do when you’re back on your feet? Someone asked.

“Go spee-luncking,” Shelby shot back with the signature wit that has endeared him to hospital staffs and served as his own balm and shield. Before any of his major surgeries, Shelby’s family members usually prayed with him. This time, however, everyone was still laughing and joking around when the nurse appeared to prep him for the O.R. Shelby’s mom, Sharon Morris, and his dad and step-mom, “Doc” and Nancy Fletcher, seemed as excited as he was. Silent prayers and hugs would suffice.

I love you guys, Shelby Fletcher told them. See you later.

Majoring in Survival

Shelby’s first operation – a temporary colostomy to rid his body of bowel waste – came hours after his birth on St. Patrick’s Day, 1977. Six months later he underwent corrective surgery for part of his digestive system, but remained susceptible to bladder infections. One of his kidneys never formed and the other wasn’t much good, doctors told his family.  They didn’t expect that kidney to last much past childhood.

Shelby flexes his muscles. By the age of 4, he had already endured several operations for congenital conditions.
Shelby flexes his muscles. By the age of 4, he had
already endured several operations for congenital
conditions.

An only child, Shelby played the cello in the school orchestra, dutifully avoided contact sports and took large doses of vitamin D so that he could grow taller than “Diff’rent Strokes” actor Gary Coleman, another child with kidney disease.  By the time he got his learner’s permit, Shelby was almost 5’7” and had traded in his cello for a spot on the Arlington High School golf team.

On Thanksgiving Day, 1993, the teenager woke up feeling lousy – a bad case of the flu, his parents hoped. Instead, things got worse. Around Christmas, Shelby learned that his kidney had failed and he began the long painful relationship with the dialysis that kept him alive between transplants.

His first donor kidney came on June 14, 1994 from his mother. Although it was not a good match from the start, it lasted three years and two months, enough time to get Shelby through graduation and pointed towards a future that included college.

At 20, he got his second kidney from a deceased donor,  a young man roughly his age who died after hitting his head on the curb in a fight. That organ eventually succumbed to medicine he was forced to take to fight a form of spinal meningitis that had attacked his weakened immune system.

There were other physical challenges. The powerful immunosuppressant drugs Shelby took to keep his body from rejecting the kidney came with side effects: Cataracts, swelling, “horrible, horrible acne” and rashes. Often sick, unable to attend classes, he put college on hold to “major in survival,” as his mother puts it.

On Christmas Eve, 2002, he returned to dialysis: Three days a week, four hours each time. As he began the difficult search for a third kidney, the transplant surgeons in Texas predicted there was an 82 percent chance of that one failing him, too. After two transplants and multiple blood transfusions to fight a parvovirus infection, the antibodies that had built up in his system made it increasingly difficult to find a good match – and hold on to it.

Shelby decided, instead, to seek advice in 2003 at Johns Hopkins Hospital, already well known for its ability to handle difficult cases and for the success of its incompatible donor program.  Finding the next kidney took 51/2 years, several trips to Baltimore for lab tests and meetings with Montgomery and other members of the Hopkins’ transplant team.

Shelby and his mother, Sharon Morris, on his 21st birthday. Morris donated the first kidney her son received at the age of 17.  It lasted three years.
Shelby and his mother, Sharon Morris, on his 21st birthday.
Morris donated the first kidney her son received at the age of
17.  It lasted three years.

Meanwhile, as his 20-something friends started careers and marriages, illness swallowed the normalcy of Shelby’s life. Without a steady job -- it was impossible to work fulltime with renal failure – Shelby could no longer afford his own place or the payments on his prized 2002 Chevy Tahoe. He moved into an extra bedroom in his aunt’s house, drove his mom’s 1992 Toyota mini-van and worked part-time for a company that sold fancy bumpers and other accessories for trucks. Driving vehicles from the dealership to the detailing shop could accommodate his dialysis schedule. He treasured the times he could spend with friends, like Austin musician and lifelong buddy Nathan Hubble.

“I wasn’t a complete couch potato,” he says. “But my life just shut right down.”

There were other disappointments. When Shelby entered Hopkins’ incompatible donor program, a relative volunteered to donate a kidney on his behalf. That agreement fell through.  A second arrangement also failed. But working with the transplant team at Hopkins – he says he had never encountered such skilled and thorough professionals – convinced Shelby he was on the proper path with the proper physician. When he heard in January that the transplant nurses had found him a match and set a date, he quit his part-time job and began preparing for another chance.

“I’m faith-minded,” he says. “I rely on God to carry me through and take care of what I need taken care of. If His timing is right, this will be the right kidney and I will keep it for a long time.”

A Gift of Health

Altruistic donor, Cyndy Dabrowski
Altruistic donor, Cindy Dabrowski.

Cindy Dabrowski, of McAllen TX, was on the verge of giving up the search for someone to whom she could give a healthy kidney. Although none of her family members had kidney disease, the former daycare operator decided to donate after reading an inspirational story about organ donors in People magazine. With surgical advances, removing a kidney was safe and relatively painless, she learned. You could return to your normal life, with no restrictions, after about six weeks, the time required for any abdominal surgery. Her husband and three grown children supported her quest. So did her elderly parents.

The biggest hurdle, she discovered, was finding someone to accept her gift. Prepared to become a donor on behalf of potential recipients who had learned about her offer from a website, she was turned down twice by hospitals in Arizona who questioned her kidney’s health.

In the end, the petite red-haired woman travelled 1,500 miles to Baltimore to give a kidney to a young man who lived in the same state as she did. It happened this way: On a visit to her daughter in Maryland, Dabrowski  looked up the website of the Johns Hopkins incompatible donor kidney transplant program. She called for an appointment. After reviewing her medical papers, Hopkins brought her in for two more kidney tests and pronounced her fit to donate in November, 2008.

After they had secured her as a donor, the Hopkins matchmakers began devising an ambitious life-saving chain. When an altruistic kidney donor agrees to give an organ to a stranger, that gift can also trigger a series of incompatible donor-paired  kidney swaps.

Inside the transplant world, 61-year-old Cindy Dabrowski is known as “the domino.” To outsiders, she’s an angel – a curious one.

 “I’m glad I listened to my inner voice,” she says. “I always knew I was a healthy person. I only need one kidney, and if I can make someone else’s life a little easier, why not? I can’t do much in the world about wars and starvation, but I knew I could do something concrete that would help make a huge difference in another person’s life. I wanted to be able to give someone the gift of good health that I’ve been so blessed with.”

Three days after surgery, she met Shelby at a donor and recipient party organized by JHH. She was overcome by the joy and appreciation she saw in his eyes.  And she realized that her kidney was sustaining someone who is the same age as her own children.

“I always thought there might be a big difference between a 30-year- old kidney and a 60-year-old kidney. Well, maybe not,” she says. “I heard that when they put the kidney into his body, someone said it was the most beautiful kidney they’d ever seen. And when the kidney started working, the medical team erupted in ‘Whoopies’!”

Another Chance

“Uncle” Shelby, age 30, holds his step-sister’s children. Enrolled in Hopkins’ incompatible kidney donor program, he awaits news of a third match.
Uncle Shelby, age 30, holds his step-sister’s children.

A week after surgery, Shelby Fletcher remains in his hospital bed, “well connected” to IVs and various other devices that support his transplant. But nothing overshadows his relief and gratitude.

His biggest, best news is his kidney: It’s working!

Although he winces whenever he adjusts his urinary catheter, the discomfort is proof that his new organ is doing its job. The next goal is to eat some of the forbidden food he’s dreamed about:  Peanut-butter and honey sandwiches, Pringles chips and green apple slices, washed down by “a big old jug of Mom’s sweet tea.”

Instead, a lunch tray arrives with barbecue on a bun and a cup of broccoli-cheese soup.  Shelby eyes it suspiciously. “That dog won’t hunt,” he observes, taking another swig from a bottle of Mountain Dew.

When he is stable enough to leave the hospital, he will eat what he pleases in a rented townhouse on Baltimore’s waterfront, less than two miles away. He will remain there, with a series of relatives, for at least two months in case he needs additional treatments. And he will touch base regularly with his transplant surgeon, a man Shelby imagines he might “hang out with” if their lives were different.

Surgeon Robert Montgomery says the potential for long term doctor/patient relationships is one of the factors that drew him to this field.

“Essentially you take care of patients for their entire lives,” he says. “It’s a little unusual for me to know a patient so long prior to a transplant. But Shelby was so difficult to match, we had to work with him for 51/2 years to try to make this happen.”

The next hurdle, he says, is keeping harmful antibodies at bay that could cause Shelby’s immune system to reject the kidney.  If the transplant passes that test, the young man must continue taking strong medications to preserve the kidney in a healthy state.

A transplanted kidney is never a cure for kidney disease or kidney failure, it’s merely a treatment. In the best care scenario, this one will take Shelby well into middle-age and into a new generation of kidney-preserving solutions. Cindy Dabrowski has provided a big hands-up.

“It’s a great advantage to have a live donor,” Montgomery says. “The average kidney from a deceased donor lasts about 8 to 10 years. For living donors, it’s more like 18 to 20 years.”

Shelby says he’s eager to begin this new lease. He imagines some possibilities: Travelling out of town without booking a guest slot at a dialysis center…starting a business with his dad…moving into his own place…owning a car he can really enjoy.

“Six years without a kidney is a very long time,” he says.

 
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