EXCHANGE: High school teacher, coach fighting kidney disease
EXCHANGE: High school teacher, coach fighting kidney disease
Feb. 09, 2018
DECATUR, Ill. (AP) — Kevin Hale will tell you anything. That's why it's so hard to believe he's been hiding something.
But Hale is ready to tell everyone now — his students and players at Eisenhower High School, his fellow teachers and coaches, and even quite a few friends and family members he's kept the secret from.
Hale has Stage 5 kidney failure. He needs a new kidney. To stay alive, he's been on dialysis for 2½ years.
Hale, 52, of Decatur, has continued to work as a psychology, sociology and U.S. history teacher at Eisenhower, where he also works as a coach. He was on the Eisenhower football staff this year and was recently hired as head baseball coach. Hale is also still doing radio as Scott Busboom's broadcast partner for high school football and basketball games.
But since June 2016, Hale has suffered from life-threatening kidney disease.
"I didn't want the world to know I was in pain, and I didn't want people coming up to me patting me on the back and feeling sorry for me," Hale said. "And I didn't want the kids in my classroom and the kids I coach to know and see me as weak."
Hale had planned to tell everyone his story when it was over. It was supposed to end Dec. 21, when his sister Kristin Black donated one of her kidneys to him. But less than a week before the planned surgery, a test revealed that Black's kidney was operating below the efficiency level needed for a transplant. The procedure was called off.
"I'd be lying if I didn't admit that I'm really sad," Hale said. "I'm heartbroken right now."
But Hale isn't giving up. He still hopes to find a kidney. He's on dialysis, he's still teaching, and still coaching baseball — even though his friends and family would rather he didn't.
"We're going to find out how tough I am," Hale said. "It's going to be hard on me. I'm really sick. There will be games where it's horribly cold, and snowing. It's going to be difficult.
"My family doesn't want me to do it. Everyone who loves me has advised against it. But, to me, it's worth me putting up a fight for.
"And I can't stop being what I am and who I am. I love baseball and I love coaching."
Hale said it's also time he told his story.
"I feel like I've been hiding — I haven't been very courageous," Hale said. "This is my coming out. I'm sharing it with the world.
"I'm on the donor list. If anybody wants to donate a kidney to me and save my life, by all means get tested to see if we're a match.
"But I want to educate people about kidney disease. People think dialysis is a death sentence, but it's not. It's a chance. It buys you time to live your life, and that's what I'm going to do."
Two and a half years ago, Hale was on summer break and noticed he didn't have much energy. He began to balloon, going from 290 pounds to 375 in two weeks, and his lungs started filling up with fluid.
"My ankles got to the point where it looked like I had elephantitis," Hale said. "I couldn't breathe, and I couldn't lie down in bed. I had to sit in the recliner to sleep.
"Finally, I couldn't do it anymore. I couldn't get enough breath and I felt claustrophobic. I told my wife, 'I'm dying. You have to take me to the hospital.'"
Hale arrived at the emergency room and was told he was in the middle of congestive heart failure because of Stage 5 kidney failure — a complication of diabetes.
To keep Hale alive, doctors prescribed dialysis.
There are two types of dialysis — peritoneal and hemodialysis. Peritoneal is done from home, with the patient usually hooked up to a machine between six and 10 hours a night. Hemodialysis is done at a dialysis center, usually three four-hour treatments a week.
Hale began on peritoneal dialysis, which he did for more than two years. His wife Ranee learned how to set up the in-home machine and took charge of using it, cleaning it and ordering the needed supplies. Once a week came a palate of dialysis bags, which the Hales stored in their home.
"I learned what the machine could and couldn't do, and what he could tolerate," Ranee Hale said. "I made sure he had his meds, and ordered his meds, and picked up his meds, and made sure he got what he needed and got where he needed.
"He's my husband. I was going to take care of him."
The machine was hooked up to Hale through tubing that was attached to a port in his abdomen. He would hook up to it at night, the bags filling his body with a liquid called dialysate, then the machine draining it.
The process gave him abdominal pain and left him nauseated.
"There were times it really hurt and I didn't get much sleep," Kevin said. "But you learn to sleep a certain way.
"The worst part is that when you wake up in the morning, you're sicker than a dog. I threw up at least every other day for a year."
But Kevin's health improved immediately.
"I wasn't yellow and swollen anymore and I lost almost 100 pounds," he said. "My heart started to function better, too."
Instead of cutting down his coaching and radio schedules, or even taking some time off work, Hale actually took on more.
"I want to be Kevin and I want to be treated like Kevin," Hale said of his attitude after starting dialysis. "I don't want to be the guy who's sick."
He went from coaching junior high basketball to becoming an assistant high school football coach and, in November, taking the head varsity baseball coaching job — both positions requiring a significant time commitment.
"He told me he was going to sign up to be a football coach and I said, 'Kevin, don't. That's so much time and so many nights away from home,'" said Sam Mills, Hale's friend and department head at Eisenhower. "And he just said, 'Sam, I have to live.'"
But there was something holding Hale back — his dialysis machine. Even though the couple took several vacations, going to Florida, New Orleans, Dallas and Houston, packing the peritoneal dialysis machine along with them, Hale said he felt tethered.
"It was a little like being Cinderella. I'd be out with my friends, then suddenly I'd have to leave. They'd be saying, 'No, stay.' And I'd just say, 'I have to go,'" he said.
"I felt an unbelievable claustrophobia being attached to that machine every night. You can only go 20 feet in any direction. I could go to the bathroom and back to bed. You take a lot for granted. If you want to go on a walk with your wife, you can't do it. I would have panic attacks."
To get off dialysis, Hale would need a new kidney. All dialysis patients are automatically put on the national registry, but he couldn't find a kidney transplant program that would take him.
"Everywhere I went they told me I was overweight," he said.
By chance, he found the University of Illinois-Chicago transplant program, which uses robotic surgery and is willing to take on higher-risk patients.
He'd also found a kidney.
Kristin Black is a 50-year-old, sixth-grade teacher at Mount Zion Intermediate School. She's married with a 26-year-old son.
Growing up, Black never would have thought she would be trying to give her older brother Kevin one of her kidneys.
"We weren't close," Black said. "Growing up, we had a little bit of a sibling rivalry. I had straight A's and everything came easy for me. I did everything to please. I think it made him sick."
Kevin Hale was close to their mom, who died when he was 16 and Black was 12.
"After she passed away, dad remarried and Kevin didn't want that — he didn't have much to do with family after that," Black said.
Black said it was a decision her brother came to regret. And as the siblings got older, they got closer.
"He felt like he hadn't been there for me and that he'd failed me," Black said. "From there, our relationship just grew and grew."
From the night Hale first took Black out to dinner to tell her about his kidneys failing, she planned to give him one of hers.
"I knew right away," she said. "He's my brother. I love him. I wanted to help him."
Once he found the UIC program, Black insisted on being tested.
"She was a perfect match," Hale said.
The surgery was scheduled for Dec. 21. Black and Hale were cross-matched twice — 21 vials of blood taken each time. There was just one more test Black had to take a week before the procedure was scheduled. Hale thought it was just a formality.
But the test revealed Black's kidneys were only operating at 67 percent. They needed to be at 85 percent to be a candidate for transplant.
"Kevin had put his hope in this situation . I felt like I let him down," Black said. "I know I did everything I could. But it broke my heart. I wanted to save him."
Scott Busboom first met Hale around 10 years ago, during his days as an Eisenhower football assistant for Rick Austin's staff. The two became friends, and five years ago when Busboom was looking for a new color commentator, he thought of Hale.
"I saw his rapport with the kids and knew he was in the classroom with them and really knew them, so it made sense," Busboom said. "Over the course of time, we've done games all over the Midwest between Eisenhower, MacArthur and Millikin. He's evolved into one of my best friends."
Hale feels the same way about Busboom: "Boomer is like my big brother," he said. But Hale didn't tell Busboom about his kidney disease until November.
"I felt like I'd taken a punch to the gut," Busboom said. "I just had no idea. It was a shock. I couldn't fathom it.
"I just said to him, 'What do you need me to do?'"
Ranee Hale, who has been married to Kevin Hale since 2006, isn't surprised her husband could hide his illness from good friends. "You would never see it," Ranee Hale said. "He just won't show it."
Those who have known about his illness are amazed at his ability to hide it.
"He's a warrior," Mills said. "He does not call into work. He won't call in, no matter what.
"We've sat down with him and said: You need to not do this or that, but for Kevin, for him to stop doing something is like giving up. So he just fights through it.
"And he's in here and he's teaching the kids. And it isn't just, turn on a movie and here you go. He teaches.
"It's incredible. I don't know how he does it. But that's Kevin."
Kevin Hale's toughness is legendary. He had quadruple bypass surgery in 2007 and coached football from a golf cart five days later.
But even he can only take so much. When the transplant was called off, it rocked him.
"We had done so many tests . That was what was so painful," Hale said. "My second chance had been right there waiting for me. I was furious. It hurt. To have the door close . my Christmas was not full of joy. It took a lot to get through those two weeks. It took a lot of the wind out of my sails."
During the months leading up to what Hale had hoped was a transplant, an infection formed in his abdominal port. He was taken off peritoneal dialysis and put on hemodialysis, which he's been on since.
Three days a week — usually Tuesday, Thursday and Sunday — Hale reports to Fresenius Kidney Care in Decatur.
"Basically, they take all the blood out of my system for four hours, put it in a machine and clean it, then put it back into me," Hale said.
Hale said when he first gets off the machine after the four-hour treatment, he can barely walk.
"When I'm done I look like a prize fighter who lost," Hale said. "It exhausts you. You just want to go home and take a nap."
But Hale is finding hemodialysis is what works best for him. He changed his treatments from afternoon to morning to allow him to coach baseball.
"It's less time-consuming that peritoneal, and I think because of the infection, the peritoneal hadn't been working as well," Hale said. "Right now it's the best option for me. I'm feeling good and I'm going to stick with it."
Ranee Hale said her husband went to a dark place when the transplant didn't work out. He considered giving up.
"He had a few days where he was drained emotionally," she said. "We had some tough conversations. I asked him if he was ready to give up, because I'm not.
"He's concerned about work, and what would happen if he had to retire early or go on disability. He doesn't want us to be burdened.
"But once he got through those first couple weeks and got back to work and started baseball season . he's on the rebound."
Kevin Hale said he considers the baseball field his sanctuary. Open gym for the Eisenhower baseball team began with school starting back up after the holiday break.
When Hale was hired in November, the administration's understanding was that he would have a new kidney and not be on dialysis. After finding out he wasn't getting a kidney, Hale went to Eisenhower principal Amy Zahm and athletic director Steve Thompson and gave them the chance to change their minds about hiring him.
"I thought I was going to have to give it up, so I was emotional, but I asked them if they wanted me to resign," Hale said. "Steve looked at me and said, 'No, I want you to be our baseball coach.'"
Thompson has known Hale since he started at Eisenhower in 2011, and considers him a friend. He said there was never any consideration of asking Hale not to coach the baseball team.
"We felt like it was something we could work through. He was a coach with a wealth of experience and knowledge," Thompson said. "We'd just announced the hire and the kids were excited about it. We're excited to have him."
To Thompson, it was a smart move as an athletic director. To Hale, it's an act of kindness he appreciates every day. He still gets choked up talking about it.
"He could have easily said, 'Go ahead and resign and take care of yourself,' and I never would have had the chance to coach again," Hale said. "For someone who is dying to have their boss look at them and say: 'I want you. Let's find a way to make this work . .' He's giving me a reason to get out of bed and get through the day. He's giving me the chance to still be me."
The Kevin Hale experience is part stand-up comedy routine and part inspirational speech — he's either cracking a joke or telling someone how incredible they are.
If it's an act, it's Oscar-level work.
There were times in the last month that Kevin wasn't . Kevin. But between baseball and an indomitable spirit ...
"He's on the rebound," Ranee said.
Busboom saw Hale on Tuesday night — they called a game together.
"Totally the same Kevin — big, brassy, happy and bold," Busboom said.
Thompson said, if anything, Kevin is more Kevin than ever.
"He's a big personality anyway," Thompson said. "And now he's got this appreciation for life, for waking up everyday."
Hale said there are times he's down, times he's sick and times he's exhausted, but he's doing what he knows how to do — being Kevin.
"I wish I could tell you I had some great epiphany, that I'm whole and that I've come out of it all with glowing feelings of joy and understanding about myself," he said. "But, honestly, I'm scared. I'm putting faith in God, and in the community.
"Right now I'm happy when sun comes up, and I'm happy when the sun sets. Sometimes you just have to learn to be happy with that."
But Hale could also be happy with a new kidney. He's on the registries he needs to be on, but harvesting organs from cadavers is difficult, and finding one that's the perfect match is even harder.
Live donors, particularly blood relatives, are the best bet. Hale has refused to take a kidney from any of his three kids. And Black's kidney is out.
Or is it? Black said she had a kidney infection at the time of the test, and she's going to see a kidney specialist to see what she can do to improve her kidney function.
"I'm going to do what I can — I've even changed my diet, cut out carbs and processed foods, and I'm going to try to lose weight," Black said. "They haven't told me to do that, but I've done some researching on my own to see what I can do.
"I'm going to do everything I can, and they're willing to test it again in six months. If it doesn't work, I have to accept it. But Kevin isn't giving up, and I'm not, either."
Source: The (Decatur) Herald-Review, http://bit.ly/2EcF1DO
Information from: Herald & Review, http://www.herald-review.com