November 22, 2014

‘What a difference a kidney makes’

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Matthew Yakubik, then 10, sits with his kidney donor, Melody Daniel, six weeks after receiving a kidney transplant in 2010, the first time he met her. Now 13, Yakubik is learning more about the process and encouraging others to become donors. (Observer courtesy photo).

Matthew Yakubik, then 10, sits with his kidney donor, Melody Daniel, six weeks after receiving a kidney transplant in 2010, the first time he met her. Now 13, Yakubik is learning more about the process and encouraging others to become donors. (Observer courtesy photo).

Teen who received kidney transplant urges others to donate

By Stephanie Choate

Observer staff

Three and a half years ago, Matthew Yakubik, then 9 and small for his age, spent most of his days tired and sick, in and out of the hospital for dialysis treatments. He slept 18 hours a day, and could only muster the energy to occasionally visit a friend next door.

Now, he is an active, sports-loving teenager, playing soccer and laser tag and hanging out with his friends—and growing like a weed.

“What a difference a kidney makes,” said Matthew’s mother, Ellen Yakubik.

More than three years after receiving a kidney transplant, the Williston eighth-grader is delving into the transplant process as part of a school project.

“I wanted to learn more about what actually happened,” Matthew said. “What happened behind the scenes. I wanted to figure out more and be an expert on it.”

Matthew was diagnosed with Focal Segmental Glomerulosclerosis, a disease that causes scarring on the kidney’s filtering system, when he was 3. By the time he was 9, his kidney function had dropped perilously low. After a nine-month search for a donor, he received a kidney transplant in 2010.

Matthew is also working to raise awareness about the critical need for donors, especially living kidney donors, hoping to inspire more people to give the gift of life.

“You have two kidneys. You can spare one. You can live with one,” he said. “It’s a way to save somebody’s life and be a kid’s hero.”

His mother, Ellen Yakubik, said that Matthew’s research has been hard at times. As a 9-year-old living with FSGS and going through the transplant process, he didn’t see statistics on complications, risks of organ rejection and even death associated with the disease.

“Now he’s seeing it and reading it and it’s dawning on him,” she said. “Part of me wanted to hide it from him, but you can’t. He has a need to talk about it as much as we may not want him to.”

RECEIVING A KIDNEY

With his family long-practiced in managing FSGS, Matthew’s kidney function was holding steady until he got a serious case of the flu in 2009. Doctors think the flu triggered a more rapid deterioration—making the need for a donor that much more critical.

“He finished fourth grade really tired and sick,” Ellen Yakubik said.

Matthew had to undergo four- to six-hour dialysis treatments three days a week during the summer of 2010.

“That was the most painful part, the dialysis part,” Matthew said.

“The longer a kid has to stay on that dialysis the harder it is,” Ellen Yakubik said. “We took many a trip to the ER for migraines and black flashes and stuff.”

No one in the family proved a match as a donor, and after a national search, a woman from Barre—Melody Daniel, a complete stranger to the Yakubik family—made it through the screening process. A woman from Williston was also prepared to donate, the family never knew whom.

Doctors removed Matthew’s kidneys on Aug. 31, 2010—though he didn’t get to keep them to bottle and put in a place of pride in his room, much to his chagrin.

Sept. 1, he received his new kidney.

“I don’t remember too much of the recovery process,” Matthew said. “I was really tired and in pain a lot. I had to relearn how to walk. I had wheelchair races with my father, which was pretty fun.”

“Intensive care will never be the same,” his mother added.

DONATING A KIDNEY

Daniel, then 34, heard about Matthew through a forwarded email Ellen Yakubik had sent to friends and coworkers.

“When I first received the email about this little boy who needed a kidney, it just really struck a cord somehow,” she said. “It took a lot of thought and research and ultimately prayer.”

Daniel said two main points in her research led to her decision. First, she learned that a kidney recipient’s body is drastically less likely to reject a kidney from a living donor than it is to reject a kidney from a cadaver, which has often been preserved with chemicals.

Ninety to 95 percent of kidneys from living donors are still working one year after transplant, and can last many years.

Daniel also learned that three out of four potential donors are disqualified for one reason or another. When that didn’t happen with her, she took it as a sign.

“I just felt like it was what I was being led to do,” she said.

Daniel said the procedure itself was smooth, and she was working from home in less than a week and back to full time within four weeks. She feels the same as she did before the surgery.

“I can’t even say enough about the transplant team and the transplant coordinator I dealt with, they were just all phenomenal,” she said, adding that they always told her she could back out at any time if she had a change of heart, even up to the morning of the surgery. “At no time did I feel pressured, and that meant a lot.”

The Yakubiks did not meet Daniel until several weeks after the surgery.

“I was very happy and very thankful,” Matthew said. “I still keep in touch with her today and send flowers…. I try to do as much as I can to know that she’s happy and that she’s well.”

“It was unbelievable. Based just on that email, for someone just to say I think I need to do this,” Yakubik said, tearing up at the memory, while Matthew leaned back in his chair for what looked suspiciously like the beginnings of an eye roll.

“He’s going to say ‘Oh, there goes mom again, he’s used to it,’” she said.

Daniel said it’s hard to find the words to explain what it means to her to have had a hand in improving a young boy’s health.

“I have been so blessed with good health,” she said. “Matthew is such a great kid. If I’ve had any hand in helping him to have more positive teenage years—they’re hard enough as it is, I can’t imagine going through them sick—if I’ve had any hand in that, I couldn’t be more pleased.”

MOVING FORWARD

Three and a half years later, Matthew is back to full speed.

“I feel perfectly fine,” he said.

Every four to six weeks, he goes to the doctor for blood testing, and must take medication every 12 hours to prevent his body from rejecting the kidney.

Certain foods are off-limits, and he must drink 120 ounces of water a day. He wears a special pad to protect his kidney when he plays sports. His hands perpetually shake.

And, still, his body could reject the kidney at any time.

“I asked (my doctor) how would it feel if my kidney started to reject. She said I wouldn’t feel it. I wouldn’t feel anything, so that’s why it makes that testing so important. There’s no physical symptoms.”

“For the most part we do fine,” Yakubik said. “The biggest challenge is getting all that water in every day.”

BECOMING A DONOR

According to Becky Daniels of the Center for Donation and Transplant based in Albany, 108 Vermonters are waiting for a kidney transplant—though she said that number is deceptively small, as it only includes those registered through Fletcher Allen, not larger hospitals outside the state.

Matt Boger of the New England Organ Bank said that in New England, more than 5,000 people are on the waiting list for lifesaving organs. Nationwide, that figure stands at 121,000.

Daniels said Vermont lags well behind other states in the organ and tissue donor registry—just 15 percent of residents are donors.

“Vermont tends to be a very giving state, very community-focused and oriented people, but due to some issues with the system, it actually has the lowest percentage of people signed up to be organ and tissue donors,” she said.

Boger said Vermont was the last state to enable official registration at Department of Motor Vehicles. Still, Boger said, only 1 percent of deaths occur in a way that leaves organs fit for donation—making a larger pool of donors critical.

Residents can sign up at the DMV the next time their license needs to be renewed, or online at www.donatelifevt.org.

“You can save up to eight lives through organ donation and impact 50 or more lives,” Daniels said.

Matthew said making a critical difference like the one he experienced firsthand—and even saving a life—is as easy as taking a couple minutes to fill out an online form.

Daniel said that while many people may not, she considers her kidney donation “a small thing.”

“It was such a positive experience for me,” she said. “Definitely, if I could encourage someone to truly consider it I absolutely would.”

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