Lakewood Ranch man perseveres through kidney transplant process

It was just before midnight on March 24, and a peaceful night in Robert and Kathy Rempert's Waterside of Lakewood Ranch home had turned from quiet and dull to an excited frenzy.

They had gotten the call.

It came from the Mayo Clinic (Jacksonville), which informed them that doctors were ready to "harvest" two kidneys that were a match for Rob, who has been on the kidney waiting list since 2020.

"She was just throwing things around," Rob said of Kathy, who raced around the house seeing whether they needed anything other than the packed bags that sit at the foot of their bed.

The couple transferred everything they needed to their car, and away they went, headed to Jacksonville and a brighter future.

They talked excitedly during the ride about the sudden turn of events. Rob, 62, has been on dialysis since 2022, trying to stay positive despite his "horrible" existence. He now had two chances at a new kidney, not one as expected. Certainly this would be different than their previous trip to Jacksonville, a few months earlier, when they were notified two hours into the drive that the kidney wasn't a viable prospect.

This time, they had two chances. They could get back to their active lifestyle in the near future.

They had not been able to make any plans, or look toward the future, because of Rob's deteriorating condition. But on the drive toward Jacksonville, as March 24 turned to March 25, they began to chat about vacation spots and places they wanted to visit.

"We knew we had two kidneys," Kathy said. "I had this huge sense of relief. I could feel the burden leaving us. We're getting a kidney, man!"

Once they arrived in Jacksonville, Rob was prepped for surgery as they awaited more information about the donor(s).

Word eventually came that an accident victim's kidney couldn't be used, so they were down to one prospect. The man in question had heart disease and was near death, but was hanging on.

It put them in an unusual spot. If the man held on too long, the organs wouldn't have the proper support from his failing heart and would be damaged. But how do you wish for someone to die sooner?

Eventually, doctors had to tell Rempert that the man had held on for too long, and the kidneys were, indeed, damaged and no longer viable.

The Remperts returned to their car, and started the long trip home.

"It was a pretty quiet ride," Kathy said. "I knew it would put Rob into a mental tailspin. We had such a tremendous amount of hope, and it went to unbelievable despair. At the end of the day, my well was dry. This thing has been horrible all around."

Rob was mustering all his ability to stay positive on that ride home.

"But I thought, 'I can't keep doing this," he said. "I am tired of it. We had contacted friends (to tell them he was going to get a kidney). We had to call everyone back."

Two months later, the bags remain packed at the Rempert's home. Their search for a live donor has shown promise at times, but for one reason or another, hasn't materialized. They believe it is more likely Rob will get a kidney from a deceased donor, if he can hang on.

Photo by Jay Heater

A 15-week-old labradoodle, Madison, is now exploring every inch of their home with unbridled energy. It was Kathy's idea to add Madison to the mix.

"It's given Rob a new sense of excitement," she said. "It has been a remarkable thing."

Rob agrees that it has been a positive move, saying it was just one more great decision by Kathy in terms of maintaining his mental well-being.

"I wouldn't be alive if it wasn't for Kathy," Rob said. "She takes care of me, and makes sure I am mentally sound."

Kathy has been trained as a wound-care nurse and works as a sales director for the ASO wound care company. She has been allowed to reduce her accounts so she can help her husband.

"It overtakes your day-to-day existence," she said of her husband's condition. "I just worry all the time. Am I going to go in and find him dead?

"We had goals and hopes. We had painted out what our life would look like. Now I can't visualize a future."

Didn't understand the severity

Rob talked to the East County Observer not so much to tell others about his condition in the hope of a donor stepping forward, but because he wants others to be aware of missteps he made that likely made his condition worsen sooner than if he had taken better action.

He first learned that he might have a troubled future when his son, Brendan, was diagnosed with kidney disease when he was 7 years old. Brendan had been sick so Rob, and his ex-wife (now Debbie Thurmond) took him to the hospital. Doctors discovered a rare blood disorder and they were going to remove Brendan's spleen. When screening before the operation, it was discovered Brendan had something that looked like Swiss cheese holes in his kidneys. A radiologist told Rob it looked like autosomal dominant polycystic kidney disease, a genetic renal disease.

The hereditary disease often renders the kidneys unable to function in a person at approximately 70 years old. At the time of Brendan's diagnosis, it was discovered that Rob had the disease as well.

Rob said he was worried mostly about his son at that moment, and didn't worry too much about himself. Besides, he had a successful career in sales and marketing for Campbell's and later for Wyeth pharmaceutical company and he didn't have time to worry about a medical condition that wouldn't worsen for many years.

"I didn't go to the doctor," Rob said. "That was a big mistake."

One thing Rob didn't know was that certain soft drinks contain phosphorus, which generally is considered an essential mineral that is a source of energy for cells. However, it can build up in the blood and worsen kidney disease.

"I was drinking a ton of Dr. Pepper and Coke," Rob said. "It was my coffee. What you don't know … you don't know.

"I felt fine. I was athletic and I had no symptoms. I thought it would be something to affect me in my 70s. I had no idea it would affect me in my 50s."

In 2010, all the symptoms began to surface. His "filtration rate" was steadily declining. By 2020, he had to sign up for the kidney wait list.

In 2022, Rob needed to go on dialysis, but he was able to do it on a device he could use at home.

"I was hooked up 9-10 hours every night," he said. "It is amazing technology. You can live a fairly normal life with the machine. I could travel, and it would suck out the toxins. Insurance covers it.

He eventually had to go to dialysis at the Fresenius Lakewood Ranch Dialysis Center.

"I was one of the few people going to dialysis who can still do stuff," he said. "They go in on stretchers and in wheelchairs. I can still play pickleball."

Rob said they have been told it usually takes three to five years to receive a kidney transplant. 

He now has had both kidneys removed because they were "the size of footballs." 

Worry from afar

Meanwhile, Brendan, a 2013 graduate of Lakewood Ranch High, has lived in Denver, Colorado, the past 18 months working for the State of Colorado Office of Homelessness Initiatives.

"It's been tough (being away)," Brendan said. "I wonder if that needs to change. For the ultimate goal, there is not much I can do. It is up to the donor system in place. I do know I could be a big help with his morale."

He is trusting a system that he might have to use one day.

"It is somewhat of a mirror for myself," he said. "Obviously, I can't be a donor because I have the same disease."

His father's journey has impacted him to concentrate on his health now. He drinks as much water as he can and never goes anywhere without his water bottle. He doesn't drink soft drinks or eat red meat. He gets his kidneys tested often and he remains in the normal range.

"I do look at the progress being made," he said, referring to doctors experimenting with transplanting pig kidneys into humans. A 62-year-old Massachusetts man died earlier this month after living two months with a transplanted pig kidney.

"Who knows what the future holds?" Brendan said.

Rob, Brendan and Kathy all want people to know they don't have to be a match with a friend or family member if they want to donate a kidney. Rob has A negative blood, which matches about 13% of the U.S. population.

"That immediately makes it more difficult," Kathy said.

But those with healthy kidneys can donate to the United Network for Organ Sharing pool in the name of the person, in this case Rob. UNOS will find a match for that kidney, and will set up Rob for a kidney transplant from another person in the pool who does match him.

"Living donors are a far better route," Kathy said. "They can schedule it and rejection levels are managed better. But I think nobody knows UNOS exists. Through the donor's altruism, they can help two lives."

Rob notes that "I can't overemphasize the quality of care (to a prospective donor by the Mayo Clinic). They do an amazing body inspection from head to toe. And if they do become a donor and they ever need an organ, they go to the top of the list.

UNOS notes that more than 100,000 people are waiting for a kidney transplant and more than 600,000 Americans receive dialysis or are living after a kidney transplant.

"It's the system we have and we need to get behind it," Brendan said. "If more people knew the reality of being a kidney donor, I think there would be more donors. You don't have to be an exact match. 

Through it all, Rob says he tries to stay positive as he waits for that next call.

"I've come to accept it as it is," he said. "I go out to dinner, I play pickleball, go to the beach. Less than 1% of the patients on dialysis can do that. I know that it would be easy to exit, You check into (hospice) and go off dialysis. You are gone in a week. It's always on my mind, every day. But I know I am in great hands, and I feel like I will get a call."