Fighting Like A Man -
Kolby Eiland

BY SARAH K. TERRY
Northwest Arkansas Times

Posted on Sunday, May 22, 2005

Nov. 12, 2004 After the news that the transplant was cancelled we were so sad. But of course it was Kolby who gave us all the strength to keep going. Kolby let us know it was no one’s fault and that it would be OK. It is typical that the 4 year old looks at things positively. He is so strong. We truly do get our strength from his courage. He just asked how long will it be till I can get a new kidney? This is a hard question for a parent to answer. They have placed Kolby on the transplant list. It could be 2 months, it could be 2 or more years. … We try to explain things to him the best we can. Kolby does really understand. I believe God gives him a special strength. — Stephanie Eiland, online journal at www.caringbridge.org/ar/kolbyeiland

Finally, at 6:30 p.m. Feb. 2, the phone rang. Stephanie and Kevin Eiland had been waiting since November, since their 4-year-old son Kolby’s first transplant fell through, to get word of an available kidney. At last they had it. Preliminary tests looked good, said Dr. Richard Blaszak, Kolby’s nephrologist at Arkansas Children’s Hospital. If they would come to Little Rock right away, there was a 90 percent chance they could do surgery in the morning. The family left their home in Wesley and arrived at the hospital at midnight. After more tests, X-rays and a bath in Betadine, their son with the sparkling blue eyes and appealing grin was taken to the operating room. It was 5 a.m. Feb. 3. "I’m going to get my new kidney," Kolby told his parents. "I’ll be back in one minute."

A not-so-rare diagnosis The Eilands’ journey began long before they got in the car the night of Feb. 2. In 2002, when Kolby was 2 1 / 2, he was diagnosed with Focal Segmental Glomerular Sclerosis, a specific form of nephrotic syndrome. The condition involves damage to the kidneys ’ filtering system, which results in too much protein entering the kidneys and being excreted through urine. The protein also builds up in the kidneys, causing scarring that eventually leads to renal failure.

According to information posted on nephrolo gychannel. com, nephrotic syndrome affects about two out of every 10,000 people, and in children, it is diagnosed most often in boys between 2 and 3 years of age.

At ACH, the number of kids on dialysis is higher now than in recent years, said Kathy Pennington, the hospital’s renal transplant coordinator. "The need for donors, obviously, is going up," she said. "There is a huge demand for transplants, but people think that it’s really rare. It’s not as common as something like strep throat, but you do see a lot of kidney failure … in children."

Before Kolby was diagnosed, he had completely stopped eating and drinking yet was gaining weight. He was lethargic, his eyes were swollen, and he became nauseated when he smelled food. There were days when he vomited up to eight times. He was also experiencing recurring bouts of pneumonia, and doctors were having a difficult time pinpointing the problem.

It was Dr. Jennifer Johnson at the Northwest Arkansas Pediatric Clinic who recognized the signs of renal trouble and referred the Eilands to ACH.

Kolby’s initial treatment involved diuretics, steroids, blood pressure medications — "all kinds of drugs," Stephanie said, "but nothing worked."

By December 2002, the boy was so mal- nourished that a feeding tube was inserted through his nose. The machine to which the tube connected would become Kolby’s constant companion, rolling alongside him for more than two years. When he wasn’t receiving nutrients through the line, it was providing fluids.

In typical Kolby fashion, he dubbed the machine "Charlie" and granted it honorary family member status, Stephanie said.

In May 2003, doctors decided to make one last effort to save Kolby’s kidneys and put him through an eight-week course of pulse IV steroids. Although he went into remission, it lasted only one week.

Then, in hopes of Kolby losing only half the amount of protein, the decision was made to remove one kidney. He underwent the surgery Sept. 11, 2003. Biopsy results on the kidney confirmed the FSGS diagnosis.

In December, a catheter was placed in Kolby’s abdomen, and peritoneal dialysis began before the second kidney was removed in January 2004.

Peritoneal dialysis is a 10-hour process accomplished while the patient sleeps, which meant the Eilands had to do it at home. Like his feeding machine, Kolby’s new machine also got a name: Chuck.

Her son did not feel the same fondness for Chuck that he did for Charlie, Stephanie said, because Chuck did not have wheels and really limited his activities.

Each night at 8 p.m., Kolby had to stop what he was doing and hook up to Chuck. That meant no overnight camping trips and no Fourth of July fireworks for as long as the procedure was necessary. "He told me when he was done with dialysis, he was going to start staying out late," Stephanie said with a laugh.

Another bummer as far as Kolby was concerned was that the catheter in his abdomen prevented him from swimming and taking baths. Sponge baths just didn’t cut it.

In the summer of 2004, the Eilands got good news: A friend of Kevin’s would donate a kidney to Kolby. After preliminary testing, the transplant was scheduled for Nov. 2, 2004. An end to Chuck was in sight.

On Oct. 28, the family traveled to Little Rock for presurgery procedures only to be told the transplant would not take place after all. Unlike the average kidney, which has one main artery leading to it, the donor had two arteries to one kidney and one artery that branched into two on the other. This made the surgery too risky — devastating news. But on Feb. 3, with the incident three months behind them, the Eilands pinned their hopes on this new kidney, a gift from an unknown Hot Springs accident victim. They knew with FSGS there was a 50 percent chance the disease would return after the transplant, but they had to take the chance.

Wake up, kidney After Kolby went into surgery, Stephanie and Kevin passed the time in the waiting room with their parents and Stephanie’s grandparents. For the first two and a half hours, all the family could do was wait and bite their fingernails.

But then, word arrived that the new kidney had produced 100 milliliters of urine in its first hour. "That was huge," Stephanie said. "It was like, oh my gosh, there’s urine! It was very emotional and exciting."

With each hour came a new update. They got on their cell phones, sharing the news with aunts, uncles, friends and neighbors.

Over the course of the five-hour operation, the kidney’s production decreased. It went from 100 milliliters to 60, to 40, then to 20. Before Kolby’s incision was closed, the kidney was no longer functioning.

The doctors did not believe Kolby’s body was rejecting the kidney as modern antirejection drugs are very effective, Stephanie said. Besides, tests showed that the organ had a good blood supply and was a healthy shade of pink.

Then, on Feb. 5, more bad news came: FSGS had returned and was attacking the new kidney.

About a week after the procedure, the doctors wanted to do a biopsy to see if the kidney had died. The Eilands said no, Dr. Blaszak believed it was "asleep" and would eventually wake up. They wanted to give it some more time.

Until the new kidney began functioning, Kolby faced an indefinite number of hemodialysis treatments. And because of the recurring FSGS, he had to start plasmapheresis, a process that removes plasma and antibodies believed to be causing the loss of protein and replaces them with a filler called albumin.

The family took a temporary apartment in Little Rock, and Kevin took six weeks leave from his job at Elkhart Products in Fayetteville. Kolby’s fifth birthday arrived on March 23, and the hospital staff threw a party.

Then, at the end of the month, the kidney at last sputtered to life.

It announced its awakening when Stephanie and Kevin accompanied Kolby to the bathroom. "All of a sudden, pee came out and hit Kevin on the arm," Stephanie recalled.

Although it was only a couple of drops, Kolby was mortified and apologized over and over to his father. He didn’t understand that his parents were crying tears of joy.

On March 31, the feeding tube came out for good, and Kolby bid farewell to Charlie. The family returned home a few days later.

Hanging in there For more than a month, Kolby returned to Little Rock twice weekly for pheresis because despite his kidney’s working, he still excretes abnormally high levels of protein. The treatments had several negative side effects, including lowered immune system function, vomiting and dropping blood pressure. Kolby underwent pheresis more than 40 times, and it seemed to be doing more harm than good. So on May 9, Dr. Blaszak decided to cut back the frequency.

Despite his difficulties, Kolby is doing much better than he has in years, Stephanie said. "Since he was 13 months old, he’s had some kind of sickness. It’s just part of his life," she said. "Now, it’s amazing. He feels good. The disease is there, and they don’t know how long he’ll get to keep this kidney. But he used to spend all day either throwing up or saying he was going to. That has stopped."

For now, Kolby eats, drinks and uses the bathroom normally. He has developed such an appetite for Kentucky Fried Chicken that his parents have rechristened the eatery Kolby Fried Chicken.

A visit to the Eiland home might find him outside, tube-free, playing ball or helping his dad build and paint his new clubhouse. He also loves to play with the family’s two new kittens, Mary Jane and Hope Faith, and he has a passion for monster trucks, particularly Grave Digger.

About two weeks ago, Stephanie and Kevin took him to a monster truck show in Fort Smith where he met Grave Digger driver Randy Brown. He walked right up to Brown and announced that he’d had a kidney transplant, like he’d known the man for years, Stephanie said.

Brown responded by giving Kolby one of everything from the Grave Digger merchandise booth and asking him what he wanted him to do during the freestyle portion of the show. "Lots and lots of donuts" were Kolby’s stunts of choice.

Although Kolby hopes to begin school in the fall, his parents don’t know if his immune system will be strong enough. But no matter what setbacks come his way, the 5-year-old soldiers through with bravery and humor. "That’s the beauty of pediatrics," said Pennington, ACH’s renal transplant coordinator. "You think, if that were me, I don’t know if I could go through this. But they keep coming back, and they take it. His attitude and personality and the fact that he lights up any room he goes into is just incredible."

For example, Kolby’s daily regimen includes three antirejection drugs and two blood pressure pills. One side effect of the antirejection medication is increased growth of hair on his face and back. "I’m turning into a gorilla," he told Stephanie one day.

Instead of becoming selfconscious, Kolby jokes about his goatee and has even turned the hair and his surgical scars into a one-liner: "Chicks dig scars and hairy guys," he says.

The longer Kolby’s new kidney continues to excrete protein, the more scarring will occur and the greater the chance becomes that it will have to be removed someday.

And if the disease returns after one transplant, the chances of it returning after a second are even higher, Pennington said. Complicating matters is the fact that extended dialysis can contribute to cardiovascular and bone disease.

To raise awareness and to help find a cure for Kolby’s disease, the Eilands have begun working with the NephCure Foundation, a nonprofit organization dedicated solely to finding a cure for nephrotic syndrome and FSGS.