Waiting for the gift of life (4/22/10)

April 22, 2010

By Greg Duggan

Observer staff

Matthew Yakubik needs a kidney.


    Observer photo by Greg Duggan
Matthew Yakubik plays lacrosse outside his house in North Williston.

Nine years old, Matthew suffers from Focal Segmental Glomerulosclerosis. A disease that usually appears in children and teens, FSGS brings about scarring on the kidneys’ filtering system, which causes protein to leak into the urine and prevents the organs from functioning at their full filtering capacity.

For Matthew, on a daily basis, that means taking five pills in the morning, three in the evening and having a growth hormone shot each night. It means having another injection, of a chemical that tells the body to produce red blood cells, every two weeks. It means drinking lots of water and constantly being aware of dietary restrictions. It means sleeping a lot, because he tires easily. And most importantly, it means that he needs a new kidney.

Matthew’s parents, Ellen and Will Yakubik, said his kidneys operate at 36 percent of their full capacity. That’s down from about 70 percent in November. When that figure hits 20 percent or so, Matthew will need to go on dialysis.

“He took a bit of a jump down, but he had been gradually progressing down for some time,” said Dr. Ann Guillot, the pediatric transplantation/nephrology doctor at Fletcher Allen Health Care who works with Matthew. “He got to the point where we said it’s time to start to prepare for a kidney transplant.”

Matthew’s family hopes to have found a donor by the time he needs to go on dialysis. Otherwise, he’ll need to join a waiting list for a transplant.

“We do kidney transplants not to avoid dialysis, but because you live longer and do better,” said Dr. Antonio Di Carlo, director of transplantation at Fletcher Allen.

Doctors say a transplant from a living donor, often called the “gift of life,” typically results in a more successful outcome than a kidney from a deceased donor and makes it easier to plan the surgery.

Oftentimes, family members have the best chance of providing a match to donate a kidney, but for various reasons that hasn’t been the case with the Yakubiks. So in the past two months, the Yakubiks turned to family, friends and the community.

Ellen Yakubik, marketing director for Blue Cross and Blue Shield of Vermont, and Will Yakubik, a quality management systems consultant, have spread the word among their professional contacts. The family has also reached out to fellow parishioners at Immaculate Heart of Mary Church in Williston, to families of Cub Scouts — Matthew belongs to Pack 692 — and to the school community. Bulletins have appeared in recent issues of the School Bell, Williston School District’s weekly newsletter.

The Yakubiks said a few dozen people have inquired about donating a kidney. Not all fit the requirements of being between the ages of 18 and 50, with blood type O and good health. Only a handful have advanced through the initial round of screening, the Yakubiks said, and there’s no guarantee any of those potential donors will meet all the criteria for a transplant.

“We’ve networked with hundreds of thousands of people, it seems like,” Will Yakubik said. “We’ve gotten a good response, but it’s a numbers game, unfortunately.”

Living with FSGS

Matthew, a brown-haired boy with blue eyes, was diagnosed with FSGS when he was 3, his parents said, following a urine analysis conducted as part of a routine physical.

Sitting in their North Williston home last week, Ellen and Will Yakubik explained the challenges of living with FSGS. Outside, Matthew joined his brother and neighbors, their shouts indicating a flurry of youthful activity as they played soccer and tag.

“Some days there are bags under his eyes, he’s lethargic. Other days he’s out playing with his brother,” Will Yakubik said. “It’s a good thing to hear him outside, running around, having fun.”

Matthew said he can usually tell by his energy level when he wakes up in the morning whether he’ll have a good day. He stays active when he has energy, playing on a Williston Little League team and practicing taekwondo twice a week.

Though the Yakubiks said they try to let Matthew and his 12-year-old brother, William, pursue a normal lifestyle, FSGS requires certain commitments. In addition to countless hours spent searching for a donor, Ellen and Will Yakubik help Matthew with his shots and pills.

William sometimes helps his brother with a daily log of medications and assists with monitoring food intake. He admits that he worries about his brother’s health.

“It’s scary for me. I don’t know how it feels to have a disease like Matthew,” William said.

Finding a donor

Since the end of February, Matthew has been preparing for his transplant. He’s going through a litany of medical tests to measure his health status. After a donor is found and the date of surgery approaches, Dr. Guillot said, the medical team will develop a sequence of procedures for the operation.

As doctors run tests on Matthew, Fletcher Allen is also working with potential donors. The hospital cannot solicit for donors on Matthew’s behalf, but it screens anyone who comes forward.

Guillot said the hospital conducts about 40 kidney transplants each year.

“We always encourage everyone to think about the process of donation,” Guillot said.

One Williston resident advocated for people to consider donations.

“I wish more people would be willing to consider donating an organ, because it can save someone’s life,” said Michelle Pierce, who donated a kidney to a friend almost two years ago.

Pierce reached out to the Yakubiks after reading about Matthew in the School Bell, and offered to speak with any potential donors. She has no regrets about providing her friend with a kidney, and encourages others to make the same gift.

“I feel the same as I did prior to donating the kidney,” Pierce said. “I continue to run, bike. I’m very active. If anything, it has been an amazing, positive experience.”

Matthew’s preparation

In recent months, Matthew has met with doctors to learn about a kidney transplant. He’s also gathered information about the process from Max Thayer, a 22-year-old from East Wallingford who received a kidney at Fletcher Allen earlier this month. Guillot put Matthew in contact with Thayer about seven months ago.

“We hit it off, and I have been seeing him on occasion and talking to him ever since,” Thayer said of his relationship with Matthew. “I like to talk to him about school, the things he’s doing and going through.”

Thayer suffered a damaged kidney as an infant, when internal bleeding scarred the organ. For the past two years, until his surgery on April 4, he had been on dialysis. Like Matthew, he often found himself exhausted, sleeping 10 or 12 hours each night. But with a new kidney, Thayer now sleeps eight hours a night, and said, “One of the immediate things I’ve noticed is, I have more energy in the morning and at night.”

Though Thayer will need to take immunosuppressive drugs through the life of his new kidney — Matthew will have to do the same — he expects his quality of life to improve dramatically.

Matthew visited Thayer in the hospital after the surgery, bringing a few gifts and asking about the operation.

“He said it didn’t hurt at all,” Matthew said.

Yet the Yakubiks realize that the hardest part is yet to come. As Will Yakubik acknowledged, the family can solicit as many potential donors as possible. Beyond that, however, they have no control over finding a compatible donor or guaranteeing a successful transplant.

“It’s hard to see your child go through this,” Will Yakubik said. “We’re doing everything we humanly can to find a living donor for him.”


If interested in learning more about donating a kidney to Matthew Yakubik, contact Kate Devine, Fletcher Allen Health Care’s Pediatric Transplantation coordinator, at 802-847-4291.