Newly Eligible, Teens Add Boost To Organ Donor List

May 25, 2018

It’s been just about six months since a new Illinois law allowing 16 and 17 year olds to donate organs went into effect. Has the change made a difference for those waiting for life-saving organ transplants?

Think about the last time you were waiting in line to get your driver's’ license: Chances are you’ve spied a poster or two on the wall about becoming an organ donor, and maybe you checked the box to say “yes” when you got your license.

You wouldn’t be alone: more than 60 percent of Illinois’ population is on the ever-growing organ donor registry that began in the 1980s. And since teens are now able to put their names down too, that number is expected to grow even bigger.

If you’re wondering why that’s a big deal, look no further than the story of Michelle Weber, a Peru, Illinois native whose kidneys are functioning at just 7 percent after a disease known as reflux nephropathy wore them down for nearly 13 years.

Like nearly 3,500 other people in Illinois, Michelle now needs a new kidney. Badly. To make matters worse, she, her husband, and their two children all have a type of kidney disease. But Michelle has it so bad she needs dialysis three times a week to stay alive. A once healthy woman, now constrained to a machine.

“Once you’re hooked up, you know, you’re sitting there for, for three hours, some people are for five, some people are even longer than that,” she explained.

Michelle’s looking for a donor, but no one in her family matches. She also has O-type blood, putting her on the longest waiting list for organs. There just aren’t enough kidneys to go around, which makes finding one a desperate struggle.

“I think it’s very important," she said of kidney donation. "There seems to be more and more people that are, you know, having to rely on dialysis in order to, you know, extend their life.”

The good news about Michelle is that she’s at least got a fighting chance. But of course, it wasn’t always that way. I dug around to find out what, or who, made organ donation such a big deal in Illinois.

The "who," in this instance, is Liz Hager. She’s been working in organ donation at the Secretary of State’s office for nearly 3 decades. Her job, she says, is to remind people of the ever-present need for donations.

“It [organ donation] is something normal people don’t even think about, unless their child is sick, or unless their mother needs a kidney or their dad is dying with kidney disease or heart disease,” Hager remarked.

Hager helped the Illinois Secretary of State's office pioneer the country’s first computerized organ registry in 1992, back when no one really knew exactly how many people had organs to offer.

“We had no way of knowing," she recalled. "But we decided that, well, there was a way to fix that. We could start a computerized registry and then we would know who they were.”

Hager says she’s traveled around the country talking about organ donation, encouraging everyone she meets to tick that box.

“Just look at the success stories," she said of those hesitant about donating, "and those people who are living today because of a generous donor family.”

One of those families is that of Larry Lefferts. His son, John, died suddenly of heart failure in 2004. John was on the donor list, and though he couldn’t give his organs, he gave his eyes, bones and tissue instead.

“His donation, in total, touched 37 people. 37 people across the country carry a part of our son with them,” Lefferts explained.

Lefferts and his wife now volunteer with organ donation groups across the country, using their son’s tragedy as a message of hope for others.

“Nothing can be normal without him, so we created a new normal where we can honor him and put one foot in front of the other.”

Now, giving organs or tissue to 37 people is no small feat. Just ask Roy Mayfield, who manages tissue recovery at Gift of Hope in Springfield.

“If we’re gonna recover eight transplantable organs, there could be up to 25 people in the operating room. It’s very complicated,” Mayfield told me in an interview there.

Moreover, you have to be legally brain-dead before anyone can even think about taking your organs. Mayfield says that’s just shy of two percent of all US deaths.

If the worst happens, Illinois has first-person consent, which means as long as you’re on the registry, you’ve given the OK to give your organs. For the new teens on the list, parents still have the say-so on what happens, but as Mayfield points out:

“In case something happens, the parents know ‘this is what my son or daughter wanted to do,’ and hopefully they can follow through on their wishes.”

For people like Michelle Weber, who needed a kidney yesterday, that could make the difference. She says she could theoretically be on dialysis for a long time and still be relatively safe, but it can't go on forever.

Her need for a new kidney grows by the day.

"Hopefully I’ll find a donor and it won’t be quite, you know, as long,” Weber wistfully remarked.

So far, more than 16,000 teens – ages 16 and 17 – have agreed to become organ donors in the short time since the new law took effect. Illinois Secretary of State Jesse White oversees the program and says he’s confident more young people in the system will help save more lives than before.

And for anyone on the fence about joining, he has this message:

“People are dying every day, and yet they’re taking their organs with them," White said with some resignation. "I sometimes say, if you by chance happen to die and go to heaven, send those organs back down to earth. You won’t need ‘em up here."

To learn more about the registry and how to donate, head to LifeGoesOn, Illinois' official organ donation website.