12 people answered the call for kidney donation

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12 people answered the call for kidney donation
Coming through for Justin

August 22, 2010
By KATHY CICHON kcichon@stmedianetwork.com

Tuesday is more than just the first day of school for Justin Butterfield.

It's the day doctors say he can begin resuming some physical activities -- something that has been off-limits since he received a kidney from a stranger nearly two months ago.

"I'm just waiting to be able to do more stuff, 'cause I'm getting tired of staying home and not doing much," the 12-year-old said.

Life is slowly getting back to normal for the Still Middle School seventh-grader, who earlier this year was placed on the waiting list for a kidney as his own two kidneys continued to deteriorate. Justin was born with kidney reflux -- the valve that carries urine away from the kidney did not open when he was in the womb. Although his kidneys were failing, he was not yet on dialysis. Doctors said Justin would have a better chance of smooth recovery if he could have the transplant before dialysis was needed. The Butterfields began looking at living donation, but found none of Justin's family members could donate.

So, in a race against time, the Butterfields appealed to the community through the pages of The Naperville Sun and Aurora Beacon-News in hopes of finding a living donor. Parents Terry and Susan wrote letters to the editor in the spring, and in April, the papers featured a profile of Justin and his search.

The family said they were encouraged and filled with hope by what happened next. Phone calls started coming in from people willing to begin the process of determining if they were a match.

And then they got the phone call that was "unbelievable," Terry said.

But it was true.

One of the people who had been a blood match -- someone who went through the entire involved process of physical exams, screenings and required psychological evaluations -- was going to give Justin a kidney.

"It was the neatest phone call in my life. To be able to say, 'we haven't spoken in a month, but guess what, I'm a match,'" the donor said.

"(Susan) started crying and she started going nuts and saying ... (the donor) is the one ... the one who is going to come through for us," Terry said of the phone call.

The donor, who wishes to remain anonymous, had never met the family before answering the appeal.

Reading the Butterfields' letter, the donor "could just feel their heartache" and "anguish the parents would be feeling in not being able to donate themselves."

The same day the letter appeared, the donor called Susan to find out Justin's blood type.

"When I read the letter, all I could think was if this was one of my children that needed a kidney, I would be doing just what the Butterfields were doing in through the media, knocking on every door that they could," the donor said.

Unsure of how many people might step forward, the donor said, "my thought process was, 'May the best kidney win.'"

Twelve people who were blood matches had contacted the Butterfields -- people who were willing to go through further screening to see if they matched. But it was the first person who called who ultimately became the donor.

"The people's response was overwhelming," Terry said. "Everybody was trying to be the donor, and the insurance (company) could only process one person at a time."

"(It's) very overwhelming thinking people would come out and support him like they did ... 'cause here we are waiting for a kidney transplant, and most people are waiting for a kidney for years ..." Terry said. "And through this campaign, in one month, we were able to find a donor. And (the donor is) a super (person)."

Stressful time
The summer has been a whirlwind of activity for the Butterfields. It was May when the donor learned of the perfect match. The following month, they were in surgery.

"Once they said it was a go, Justin was ready," Terry said. "And it happened so quick. June 29th. And again that was due basically to the persistence of (the donor)."

The donor frequently called the medical teams at Northwestern Memorial Hospital and Children's Memorial Hospital to ensure plans were moving forward. The donor's kidney was removed by surgeons at Northwestern, and then transported to Children's Memorial for Justin to receive.

While the donor was very determined to see it through, the Butterfields still worried. They had heard stories from doctors about donors who change their minds at the last minute.

"We're going through a very stressful time. Is (the donor) going to go the whole way, or is (the donor) going to stop?" Terry said.

"You just never know," Susan said. "You just never know what they're going to decide at the end."

But the thought of not seeing it through never crossed the donor's mind -- but the doctors constantly asked to make sure.

"Really, right down to when they were putting the IV in and starting the anesthesia," the hospital asked if the donor was sure about the decision. "You always knew you had an out. There wasn't any pressure."

"That never really was a concern," the donor said of any worries for personal health. "It was, I have two healthy kidneys, and I only need one. And I have no problem giving one away."

"My nervousness was more so is this going to work for Justin?" the donor said. "How am I going to feel if this doesn't work? That was my nervousness."

He saw fireworks
When June 29 arrived, Justin wasn't worried about the surgery. Rather, he was nervous about having to stay in the hospital a long time "'cause I was going to miss the Fourth of July," Justin said. "I thought I was going to."

"But he didn't," Susan said.

"He was out for the fireworks. He was able to go (and watch from the car)," Terry said.

While the family was prepared for the surgery to last eight hours, it took half that time. Justin progressed so quickly, he was able to go home after just four days.

"It was so quick, I just couldn't believe it," Susan said.

"He did so well, the procedure went so ... you couldn't ask for a better outcome and everything," Terry said. "The good thing about this is why he did recover so well is because he didn't have dialysis."

"Not every kid is like that," Susan said.

"We avoided a lot of the major complications," Terry said.

Now, Justin said he is "good. I'm really good."

"Right after the surgery, I was really sore," Justin said. "Then every week, I got better."

Before surgery, as the kidneys were failing, he would go to bed by 8 or 9 p.m. because he was so worn out. Now, he has more energy and can stay up later.

"I usually stay up until around 11 now," Justin said.

Now he's excited about going back to school, "'cause I get to do physical stuff," Justin said.

Right now he can't do any physical activity until Tuesday. Then he can start getting a little more active.

"Right now it's just video games and walks. He's been a bored puppy for the last two months," Terry said.

He will still take the year easy, as he won't participate in any team sports until next year.

"He'll be going back to karate, but he won't be sparring," Terry said.

The last few weeks, he has been hanging out with his friends, reading and playing video games (he's excelled at the game Call of Duty).

His friends and their families have been supportive of him during his recovery.

"They were cool about it," Justin said. "They helped me keep time on my medicines and watch what I eat and make sure I have water to drink," Justin said.

Since the surgery, Justin has to eat a low-sodium diet, to drink plenty of water and take medication in the morning and evening.

Now, he goes for blood work twice a week to make sure his body is not rejecting the new kidney.

"It gets boring being poked all the time," Justin said.

"Part of the course is having an up and down level. Especially at first because your body is adjusting to it," Susan said.

Justin is watched very carefully by the doctors. In addition to the blood tests, his blood pressure is also monitored. If Justin's blood pressure is off -- high or low -- his medicine needs to be adjusted.

"That's where we are right now, we're in our critical stages in getting the new kidney functioning. It takes two to three months to get everything dialed in ... everything is a matrix that has to come together for it to work without rejection," Terry said.

"I'm still worried about getting rejection and hoping the (blood) chemistries come back good so I don't have worry about getting biopsies or staying in the hospital for seven days for rejection medicine," Justin said.

"But everything is going stable now. But every day, we see something different," Terry said.

Remarkable support
With life returning to the normal routine, the Butterfields want to express their gratitude to the community for all of the prayers, support and interest, Susan said.

"For taking Justin into their heart," Terry said.

"Just great appreciation," Susan said.

"For trying," Justin said.

"The fact that they tried to volunteer is remarkable," Susan said.

"You don't think like that. We're hearing stories from the doctors that it's years before people get kidneys, and here Justin's plea was answered right away," Terry said. "It wasn't just one person. It was eight to 12 people wanting to help him (by donating)."

Support during the search came from staff at Indian Prairie School District 204, community members, the medical teams at Children's Memorial and Northwestern Memorial hospitals. Midwest Edge Dance, where Justin's sister Krystal dances, did a show in his honor.

"We can't say enough thanks to everybody," Terry said.

There was one person in particular Justin wanted to thank.

"I think (the donor) is a really special (person) for helping me out with my kidney transplant because not much people in the world would do that. And I love (the donor) for doing it. And I wish for (the donor) to have a successful recovery," Justin said.

The donor, who was able to leave the hospital 24 hours after the surgery, is doing well.

"Full-time back at work, just started back to my exercise regimen this week, and just feeling really well," the donor said.

The donor is grateful for the opportunity to help someone.

"It was so rewarding for me. I know I gave him a gift with my kidney. But this has been a gift for me as well," the donor said.

The donor hopes others will be inspired to "pay it forward" by signing the back of their driver's licenses, donating blood or considering a living donation.

"It's just incredible when you can seize it and do it," the donor said.

And now, two families that didn't know each other six moths ago will forever be connected.

"I couldn't ask for a nicer family to be linked to," the donor said.

"(The donor) is part of the family now," Terry said.

http://www.suburbanchicagonews.com/beaconnews/news/2623844,6_1_NA22_KIDNEY_S1-100822.article