Wednesday, May 23, 2018
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Brian Dugger

A daughter’s enduring gift

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Dave Hackenberg and his daughter, Amy Walker, spend time together on Nov. 16 in a recovery room at UTMC after Mrs. Walker donated a kidney to her father.

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Dave Hackenberg is in an unusual — and frankly, an uncomfortable — position.

He’s a storyteller and a journalist. He always will be. He told the best of stories over 38 years as a Blade sportswriter and columnist before retiring in July, 2016.

Now, he has broken one of the golden rules of journalism: Don’t become the story.

But let’s let him slide by on a technicality. Maybe the real story is about a daughter’s love and a Toledo doctor with designs on changing the world of medicine. As Mr. Hackenberg says, all he really did was go to sleep.

The birthday surprise

One day after his 65th birthday, on Sept. 14, Mr. Hackenberg and his wife, Sue, went to the house of his daughter, Amy Walker, in Clinton Township, Mich. Mr. Hackenberg’s grandson, 6-year-old Ian, proudly handed over his birthday gift — a liter of Mountain Dew purchased with his allowance money. Next, Amy passed a small, black box across the room to her father. It was a total, unintended coincidence, but the insignia on the lid read: LUVAMI. He opened the box and stared in bewilderment at ... a small kidney bean.

“You got me a bean for my birthday?” Mr. Hackenberg chuckled.

“No, dumbass, I am giving you a kidney,” Amy said.

Tears started streaming down Mr. Hackenberg’s face, and they have seldom stopped running since.

A growing epidemic

More than 100,000 people are waiting for a kidney transplant in the United States. About 17,000 kidney transplant surgeries are done each year, leaving a whole lot of people stuck with no other option than waiting and going on life-altering and painful dialysis.

“I’ve been in Toledo since 1999, and the incidence of kidney disease has tripled since I’ve been here,” says Dr. Michael Rees, a transplant surgeon at the University of Toledo Medical Center.

He suspects part of the reason may be because of the growing number of obese people in the region. Obesity often leads to diabetes and high blood pressure, conditions that wreak havoc on the kidneys.

Though not obese, Mr. Hackenberg was diagnosed with Type 2 diabetes about 12 years ago. As part of his care, he was sent to a kidney specialist, a nephrologist. The doctor explained the likely progression of his disease and its effect on his kidneys.

“He tells you what is at the end of the road. But that road looks like the Ohio Turnpike, so I didn’t think about it too much,” Mr. Hackenberg says. “But then you start to see that end of the road. I was diagnosed with end stage renal disease at the beginning of the year.”

Few people realize, but kidney disease is covered by the only disease-specific Medicare entitlement program in the United States. Richard Nixon signed into existence the End Stage Renal Disease Program in 1972. For more than 90 percent of Americans, Medicare will cover kidney disease care, whether it is dialysis or a transplant. 

Mr. Hackenberg went on a transplant waiting list at the end of August. It normally takes at least three years to find a match. 

“I hated it because I was waiting for a 60-car pileup on I-75,” Mr. Hackenberg says.

Another option

Besides cadavers, donated kidneys can come from a living donor. Often a child can donate to a father, since muscle tissue and blood and antigen types are similar. Amy was a perfect match for her father. But mothers have no such luck. As a woman carries a child, her body builds up immunity to that fetus. If the child would later donate an organ, the mother’s body would kill it.

Dr. Rees found a solution to the problem, founding the Alliance for Paired Kidney Donation (paireddonation.org) in 2000. His father, Alan Rees, was able to design a computer software program that matches prospective donors. The program works like this: Amy is not a match for her mother, but she is a match for “Gabrielle’s” mother. Gabrielle is not a match for her mother but her kidney is a match for Amy’s mother. Each donor commits to giving the other mother her kidney. The typical donation of a live kidney results in a chain of at least five people who receive kidneys. The longest chain in Dr. Rees’ program is 30 people. Anyone who is healthy enough can be a donor. 

A person who receives a kidney from a live donor has a life expectancy of 10-12 years longer than if he received a kidney from a cadaver. A transplant of any kind adds at least 10 years compared to living on dialysis.

“Organ donation is a beautiful thing,” Dr. Rees says. “If you go to the Bureau of Motor Vehicles, they ask you if you would like to be an organ donor. What they should really ask you is: ‘If you develop kidney failure, would you want a kidney transplant? If the answer is yes, then you should be a donor.

“Toledo has one of the shortest waiting times in the U.S. It is a very generous population.”

On Nov. 16, Mr. Hackenberg became a beneficiary of his daughter’s generosity. In side-by-side surgical suites at UTMC, the father, with Dr. Rees as his surgeon, received the gift of extended life from his daughter, who was operated on by Dr. Obi Ekwenna, also a UTMC transplant surgeon.

“She gave him a kidney and gave him 10 extra years,” Dr. Rees says of Amy. “That’s a grandpa who will be around for 10 more years.

A special Christmas

About a month after the surgery, Mr. Hackenberg is sitting in a toasty living room, a fire roaring in the background. His 7-year-old golden retriever Elsie shuffles by on a bad leg, looking for a willing partner to play catch. 

Amy says her father has been an emotional wreck the couple of months. He admits weeping when a short tribute video was played during the broadcast of the Army-Navy game. Now, the once-stoic newspaper columnist sometimes holds back tears while talking to me in his living room, sometimes he doesn’t.

“What do you do for Amy? I’m her father. She’s her mother,” Mr. Hackenberg says, pointing toward Sue, who is sitting nearby. “Everything has a part of us in her. But you don’t expect to have a part of your child in you.”

The surgery has changed Amy more than just physically. She and her husband, Jeff, spent a lot of time educating themselves on kidney donation. She plans on using that knowledge to give speeches and pass along what she has learned.

“It was an emotional decision, but this is my dad. I had to save him,” Amy says. “Until this happens to someone you know, you don’t give donation a second thought. You don’t wake up and say, ‘Hey, I’m going to give a kidney today.’ I want to educate people about the process.”

Monday will be the first time the whole family is together since the surgery. Mr. Hackenberg and Sue will travel to Amy and Jeff’s house. Ian will be there, of course, probably with another liter of Mountain Dew. And Mr. Hackenberg’s other daughter, Beth Mahfood, and her husband, Alex, will join them.

“This Christmas is going to be amazing,” Jeff says. “Ian loves his grandparents, and knowing that he will be able to spend so much more time with his grandfather is just awesome.”

At some point, the conversation will drift back to Nov. 16 and how Amy, Dr. Rees, and Dr. Ekwenna are the real heroes of the day.

“I had the easiest job in the room. They put me asleep, and I woke up with a new kidney,” Mr. Hackenberg says. “Seriously, how do you say thank you to a child who has done that for you?”

Contact Brian Dugger at bdugger@theblade.com or on Twitter @DuggerCountry.

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