Living on borrowed parts: Lee County educator powers through lifelong kidney disease

Clawing at the air around his hospital bed, Mike Kain groggily rolled through the typical post-surgery questions.

“Where am I?” “Am I alive?” “Am I OK?”

And that’s when his wife, Karen, pointed to the urine bag hanging at his bedside.

“It’s so full of pee!” she exclaimed. “There’s so much pee!”

Considered the yellow gold of kidney transplants, the bag of urine served as the first sign that Kain’s surgery was a success, and that his new organ, by the nickname of Lil’ Dinger, was the home run his family had been praying for during the past two years.

That’s because in April 2016, Kain’s lengthy run with a donated kidney from his father came to an end, forcing the now 37-year-old into a dialysis regimen that kept him hunkered in his second-floor bedroom and stationary for nine-and-a-half hours every night.

From his bed, he caught up on work. Wrote papers for his graduate degree program. And snuggled, talked and played with his seven children.

“It was really survival mode,” Kain said.

In the mornings, he was out the door and leading what others thought were his normal life — as a Lee County educator, a Florida Gulf Coast University student, and a family man.

“I just didn’t want anyone to know,” he said, later adding: "It’s not that I pretend it’s not there, but of all of the things I could think about that’s about me and what I am about, being sick is not one of them."

‘Living’ with kidney disease

Even when he met his wife in college, Kain struggled with telling her about the degenerative kidney disease he was born with.

“I remember thinking, ‘I gotta tell her about this.' But I also didn’t want to scare her away because, to me it wasn’t a big deal, but to another person you want to spend the rest of your life with, it could be a big deal,” said Kain, sitting on his living room couch next to his wife of 14 years.

Karen nodded, adding: “You are living on borrowed parts."

“I know, it’s like I’m the Bionic Man or something,” Kain said with a chuckle. “And luckily, thankfully, it wasn’t a big deal.”

Today, Kain will celebrate the gifts he has been given in life — his newfound health, two successful kidney transplants, and a large support system that has kept him thriving since he first felt the impacts of Alport syndrome.

At the time, he was 17, a senior in high school, and living a normal, active life when his kidney gave out in the middle of one of his cross country practices. He remembers being overcome with exhaustion, and needing to walk back to the locker-room.

Tests confirmed that the kidney disease was to blame, and, on his 18th birthday, Kain started his first round of dialysis. Ten months of medications, shots and dialysis later, he received a transplant from his father, Jeffrey.

While live donor kidneys statistically outperform those donated from a deceased donor, they won’t last forever.

The original kidney was a great match for Kain, with no real rejection episodes or out-of-the-norm complications to report for 17 “blessed” years. But in 2016, Kain started to feel different, and the numbers tracking the health of his kidney began to indicate problems.

In April of that year, Kain was taking the stairs to his sixth-grade math class at Six Mile Charter Academy, where his students were about to sit for their end-of-year state exam. Just like he knew something was wrong at his running practice years earlier, Kain knew he was in trouble.

“I just couldn’t move anymore,” he said. “I had to get out of there.”

His wife drove him to the hospital, where tests revealed he was in kidney failure and in need of emergency surgery. During the procedure, a direct-line catheter was placed in his chest so he could start dialysis immediately — first at DaVita Kidney Care, and eventually at home.

“I was literally dying in the hospital, and they brought me back to life with that dialysis,” Kain said.

Figuring out family life on a machine

And that entailed some big changes for his family.

“When you are on dialysis, you can’t take trips, you can’t go camping, you can’t do the things you would normally do,” Kain said.

This meant the family became more homebound in their activities, choosing movies and books over outside activities. And the kids, ranging in age from toddlers to teenagers, rotated through their parents’ bedroom in the afternoons and evenings to spend some quality time with dad.

They would talk about their days, school projects and sometimes bust out a game on the PlayStation. For Kain’s two youngest children, 2-year-old Kadence and Jonah, 4, it usually meant story time, cuddles and naps with dad.

“My two youngest, I have basically been sick pretty much their whole lives, so they don’t know anything different, but my oldest three definitely have felt the effects of all of that for sure,” Kain said. “It was very, very difficult. Very, very difficult.”

That’s especially true for the couple’s oldest child, 13-year-old Rowan, a seventh-grader at Veterans Park Academy for the Arts, a K-through-8 school where all of the Kain kids who are old enough attend school.

He watched his dad — someone he described as an enthusiastic, energetic go-getter — fall ill with fatigue and having to constantly be whisked away to doctor’s appointments.

“It was really scary. It was freaky,” he said. “It’s scary because, like, one day he was there, and then he had high blood pressure and was rushed to the hospital the next minute.”

Because he is the oldest, Rowan was asked to take on more responsibility.

“Watching over six other kids is surprisingly very exhausting,” Rowan said, mimicking his father's sense of humor. But his face grew serious as he added: “When he was gone, I was a little stressed out, because you know, having a parent out for a long time really has an effect on you.”

This isn’t lost on his parents, who were quick to praise their children for having such positive attitudes even in the darkest of times. And Kain gives all of the credit to his wife.

“She has almost been like a single parent in a way over the last couple of years because I have not been able to physically or emotionally or mentally be here,” he said. “The fact that I am having that part of my life back is just to be something that is going to benefit our entire family, and I’m really excited to see what happens.”

Dialysis by night, work by day

Despite his medical ordeal, Kain was eager to get back to his classroom in 2016. He was cleared to go back to work after missing nearly a semester’s worth of time, and was able to get in front of his students just in time for the end of the school year.

But he remained quiet about the daily at-home dialysis treatments that kept him alive.

“I was still able to put all of that stuff in a box and go to work and do the best job that I could, and I never really wanted anyone to know about it,” he said.

His reason: to avoid the pity that comes with being the sick guy. 

“I like empathy and I like compassion and I like when people go out of their way to help somebody, but what I think is the worst thing is to be on the receiving end of pity," he said. “I try to be positive all the time and have a good attitude and just power through even if it’s tough. That’s mainly why I didn’t want anyone to know the particulars of that, because if they do — if pity sneaks in there somehow, it just kind of muddies everything.”

And that philosophy carried over into his master’s program at Florida Gulf Coast University.

Pictures on his wife’s Facebook account show Kain in hospital gowns with a laptop on his bed, where he typed away at assignments. And his at-home treatment center, known as his bedroom, doubled as a homework zone for more than just his kids.

Throughout his master's program, Kain only asked for one extension on a paper, and that was when he was having surgery related to his dialysis tube. In an email to his professor, Kain quickly explained the situation, how he was nearly done with the assignment, and just wanted to know if he could have an extra day to turn it in just in case.

“I didn’t need it, but he was like, ‘Wow, that’s incredible,’” Kain said.

His dedication to his graduate program paid off, and one of his professors gave his name to Principal Debbie Diggs at North Fort Myers High School. She was in need of a new testing coordinator who also could handle technology, data collection and some teacher training on any new testing or classroom software.

The job would be a challenge for Kain, not only because he had never worked in a high school before, but because it was a mid-year promotion that would put him up against a steep learning curve to prepare a large school for the hectic year-end exam schedule.

This, Diggs said, included coordinating schedules for teachers and students, providing special accommodations to students who needed them, as well as making sure that everything runs smoothly on exam day, be it for local or statewide tests.

“I talked to him, we emailed, he interviewed for the position, and during the interview I knew right away — sometimes you know right away,” Diggs said of picking Kain for the job. “He just has this super positive outlook on everything. ‘I may not know everything, but I’m a quick learner, and I’m just real eager and excited.’”

That energy was felt immediately on campus by staff, including Laurie Wray, the head of the math department. 

“The kind of testing we do in a high school — it’s a job. I sometimes wonder how one person can do the job, it seems like it should  be three to do that job, with all that coordination,” she said, adding: “Without somebody in that position that he is in, that’s of the caliber that he is, we can fall apart.”

Kain, who is a perfectionist, said he would often bring his work home with him at night, just so he could double and triple check his plans to ensure he got it just right for the school.

This helped him feel more confident in his work, as the dialysis often left him feeling cloudy. The same could be said of his graduate work, where he would need to read a single paragraph four or five times before he was sure he had digested all the information correctly.

“I felt like I was powering through with a learning disability,” he said.

But to the outside world, nobody knew of his struggles.

In May, he graduated with his master’s degree, and segued himself into a doctoral program at FGCU for educational leadership. In August, roughly a month before he was scheduled for the kidney transplant, Kain shocked his principal when he told her what was going on behind the scenes.

Diggs quickly learned that Kain's desire to keep his medical situation quiet helped preserve his workplace as an escape, giving him a place where he could feel normal.

“His illness doesn’t define him,” Diggs said. “He wants people to be focused on the work and about doing what’s important for kids and, for him, making teachers’ lives easier so they can focus on the kids.”

Round two: a new kidney

After nearly a year-and-a-half on daily dialysis, Kain was told the good news: a surgery would be scheduled at Tampa General Hospital. And this allowed his sister, a genetic match, to finally be able to give her brother a kidney.

The two are the middle children in the family, with one older and one younger brother. “Mike and I always had a different type of relationship," said Dayna Cook, 34. "He was always a role model to me."

When he was in need of his first transplant, she was about 15 years old, and quickly volunteered to be the donor. But her parents weren’t so keen on that idea.

“They told me that I could worry about the next one,” she said. “I just knew that the moment he started rejection, I would do it in a heartbeat… there is nothing in the world that would make me not want to do this."

But then Hurricane Irma intervened.

The siblings’ pre-op work and surgeries were planned right around the week of Sept. 11, which is when the storm roared through Southwest Florida. Their procedures were quickly canceled, and the Kain family turned their attention to storm-prep.

The family of nine — plus puppy Benny — rode out the storm in their home, huddled together in a hallway during the worst of it. Water seeped through one side of the house, leaving the downstairs portion of the home drenched with damage.

“Irma came on in and not only sabotaged the transplant — we had to cancel everything — but also it destroyed our house. We were out of there completely,” Kain said.

For at least 10 days, the family lived in a 900-square-foot condo in Cape Coral, and, when it was without power, Kain activated his emergency dialysis kit.

“You have to warm it up yourself, hang it on an IV pole, so I did that for a day with no lights. It was insanity,” he said.

The power in the Cape was restored quickly, and, when they could start working on their own home, the downstairs bathroom, kitchen, flooring and the first 3 to 4 feet of drywall on one side of the house had to be torn out.

During this hectic time, Kain and Cook were told by Tampa General that their surgeries had been rescheduled for Sept. 28. The procedures went well, but some unexpected complications rose up in the recovery stages for Kain.

Complications and a near miss

Lil’ Dinger, as Kain named his kidney, functioned great from the start, producing urine right away. But the two transplanted kidneys came from genetic matches, and their antibodies, which protect the body from infection and viruses, began to work in opposition of each other.

Kain jokingly called this a mini civil war inside his body, and his doctors treated it with a few rounds of plasmapheresis, a process in which antibodies are removed from the blood stream.

In addition to this, Kain was receiving immunoglobulin treatments, which boosted his blood cells while tearing down the immune system so it can repair itself. Kain called it his junior chemo, because it is a similar type of treatment on an IV drip with far fewer side effects.

These treatments required Kain to travel to Tampa nearly every other day, and on Nov. 15 he received official word from the hospital that all the antibodies had been taken care of, and he was in the clear.

But the celebration was short-lived.

The next day, Kain went in for what he thought was his final procedure for this transplant — a surgery to remove a stent from his ureter and a tube from his chest. He was discharged Friday, and although he felt tired, he chalked it up to the surgery from the day before.

Overnight, however, Kain developed a fever and chest pains, and was rushed to Gulf Coast Medical Center the next morning. After some tests, the team sent him on an ambulance back to Tampa.

Here, they discovered that when surgeons pulled out the stent, his ureter collapsed, causing a backup and blockage that meant his kidneys couldn’t drain properly. This caused an infection, and led his kidneys’ health to plummet.

“It was like quickly going from everything being amazing to now being in kidney failure,” Kain explained.

Surgeons were able to drain the fluid out of his body, bringing his numbers back into the normal range, and, when he was stable, they performed another operation to put the stent back into his body. While they were in there, they took some photos to ensure the complications were handled.

Although he has yet to be released to his local doctors, Kain is feeling great and is confident the complications are behind him. But the issues did push back his return to work, which was scheduled to happen originally just after Thanksgiving break.

"I thought I would get better quicker, and that never really happened," Kain said.

While his medical bills have been taken care of for the most part, the travel and basic living expenses have been difficult to keep up with.

"At this point, the main goal is to get back to work, because quickly we'll go from stress to a tear," he said. "Thankfully, we've been able to keep afloat, and we're grateful for that."

Especially because his newest organ, Lil’ Dinger, is doing great since his complications have subsided. And that comes as no surprise to Kain, who named the kidney in honor of his donor. 

Moving forward

“Dinger” has long been his sister's work nickname, and also means a home run in baseball lingo. Coming from a big baseball family, Cook threw it out as a name possibility, and the siblings agree it was the right call.

“She’s a fighter,” Cook said. “Though he had complications, she, the kidney, is fighting. He almost lost it there last week. That was a little rough, but everything is stable.”

Kain agreed, saying the kidney, which he has personified on Facebook as "a spicy little meatball" in his posts, bounced back and fought hard against the infection.

“It was totally a home run all the way,” he said.

And that, he said, couldn’t have happened without the love of his support system.

“When times get tough, we have a tendency, I think, sometimes to shrink inward and really focus on things ourselves, and not reach out to a support system. We want to take care of it ourselves,” Kain said. “If I have learned anything, at least from being forced to be dependent on other people, I think it's that you just have to reach out to your community.”

He added: “If I didn’t have my support group with me — my friends, family and definitely my faith — I feel like I don’t know if I would have made it through this.”

As the holiday season continues, he’s looking forward to setting some big goals for 2018.

“I was always the guy with a notebook sitting down and writing resolutions and goals and things I wanted to accomplish. And it’s sad to say in 2016 and ’17, I really didn’t put anything on those pages,” Kain said. “When everyone else was celebrating on New Year’s Eve, I was sleeping in my bed because I needed to be hooked up to a machine.”

Kain said he is eager to move forward with his newfound enthusiasm, clarity and energy, and apply it to work and school. 

But his biggest hope is recapturing his role of an active dad and husband.

“I’m excited to be able to play on the floor with my kids again. To be able to, if I need to, run up stairs — that I could get up my stairs and not feel like I have to take a nap,” Kain said. “Right now I feel like I could run and run and run, but obviously I can’t. So I am looking forward to that energy, to be able to invest in them in the way I should have been if I had a normal life the last couple of years.”

Connect with this reporter on Twitter: @NP_pstaik.

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