News Photo by Darby Hinkley Carlos Vivero, of Alpena, talks about his journey after being diagnosed with a rare kidney disease in 2022. The 36-year-old father of four is currently on the transplant list.

ALPENA — When you’re in your 30s, married to the love of your life with four beautiful children, the last thing you think you’ll hear is that you need a kidney transplant. But that’s what Carlos Vivero, of Alpena, learned after being diagnosed with a rare kidney disease in 2022, after undergoing a range of medical testing. He is now on the transplant list, seeking a living donor.

“I have a very rare kidney condition called FSGS,” said Carlos Vivero, 36. “Only about seven in one million people get diagnosed with it every year.”

FSGS stands for focal segmental glomerulosclerosis, a kidney disease that causes scarring in the glomeruli, the kidney’s filtering units.

“We didn’t actually completely find out until 2022 because he had to go through so much testing,” said his wife, Shannon Vivero. They’ve been married 16 years.

“In 2021, we got sick with COVID,” Carlos Vivero explained. “The entire family did … and, after about three or four days, the kids, it didn’t really affect them.”

He said Shannon was sick for about three days, but then she got better.

“I never did,” Carlos Vivero said. “I never got any better.”

He said he couldn’t even drink water, and he had a fever for over two weeks.

“At that point, I didn’t realize I had a kidney condition, because I’ve always been a healthy person,” Carlos Vivero said. “I’ve never had any issues. I never really had a reason to go to the hospital.”

The Viveros took him to the hospital in Alpena, and they were told to go home and have him take Tylenol and ibuprofen, Shannon Vivero said.

“He had never taken ibuprofen previous to the ER telling him to take ibuprofen,” she said.

“That’s important, because ibuprofen is terrible for your kidneys,” Carlos Vivero said. “It really messed me up. It just hit my kidneys hard.”

They said that was a Saturday, and the following Sunday they were home, then they had planned to drive down to Ohio to get a dog for one of their children for their birthday.

“At that point in time, all I wanted to do was sleep,” Carlos Vivero said. “I was tired all the time. I didn’t know what was going on, and I had fevers. And I told Shannon, ‘You guys go ahead. I’m just going to sleep it off.’ And she was like, ‘No, no, you’re coming with me.’ Which is a good thing, because at that point, we got to Ohio, about a seven-hour drive, picked up the dog, and then, I was pretty much unresponsive the entire time.”

That’s when Shannon decided to take him to the University of Michigan Health in Ann Arbor.

“We were, like, 20 minutes away, and he was completely unresponsive,” she said.

“I was totally dehydrated,” Carlos Vivero said. “My skin was yellow. My eyes were yellow.”

He had lost 20 pounds in just a few weeks over the course of the illness, and he didn’t need to lose weight because he only weighed 140 pounds in the first place.

“I felt his pulse, and it was very weak,” Shannon Vivero said. “It was raining that night, and I had four kids and a puppy in the car. I called the trauma line … they were like, ‘Get here as safely and quickly as possible. Go into the ambulance bay. We’ll be waiting for you.'”

When they arrived at the hospital, they were met with a team ready to help Carlos.

“His oxygen was super low,” Shannon Vivero said. “He couldn’t even get out of the car into the wheelchair. They had to pick him up and move him.”

She gave him a kiss, and he weakly said to her, “Don’t leave me.” But, COVID protocols were still in place at that point, so Shannon and the children couldn’t come into the hospital with him. It was August of 2021. It was also move-in week at the University of Michigan, and Shannon had to try to find a hotel room for herself, four kids, and a dog. They were down in Ann Arbor for four days.

“It was chaos, but the doctors there were absolutely phenomenal,” Shannon Vivero said. “They kept face-timing me and giving me updates, letting me know how he’s doing.”

He gives all the credit to his wife.

“She’s the one who saved my life,” he said. “If she wouldn’t have taken me there, I would’ve been dead. And they told me that.”

He was released on the fourth day.

“They wanted me to get back to somewhat normal, and then wanted to check on my kidney function, because it had already gone down,” Carlos Vivero said. “They were fantastic there.”

After that, a long series of medical appointments began. He was referred to a nephrologist, who specializes in kidney disease, in Tawas.

“The key procedure was going to be a kidney biopsy to figure out exactly what happened, or what condition I have,” Carlos Vivero said.

He had that procedure done in January of 2022 at Covenant Health in Saginaw.

“It took them a few months to figure out what was going on,” Carlos Vivero said. “They told me I was diagnosed with FSGS. It’s a rare condition. The only thing they still haven’t figured out is if it’s a genetic condition, or if it was environmental.”

He said the doctors told him he has likely had the condition for most of his life, if not his entire life.

“I never knew, just because when you have a kidney disease, most of the time, you don’t show any symptoms,” Carlos Vivero said. “They call it the ‘silent killer.'”

He was put on some medications to try to control the disease as long as possible. They expected that he could be on those medications for several decades before a decline.

“Now, just a few years after, I’m on the border of needing a transplant,” Carlos Vivero said. “Because it decreased pretty quick. Thankfully, right now, my levels have been steady for almost five months, which is a great sign. It means the medication is working. I’m going to try to ride it out as long as possible. But, because I’ve already hit 20% kidney function, as soon as you hit 20%, you’re eligible to start the whole process” of getting on the transplant list.

The Viveros are so grateful to friends and family members who have stepped up to start the application process of becoming a potential live kidney donor, including Jason Beatty and Bryce Fox.

They will be going through Henry Ford Health in Detroit for the transplant.

“They have a team of three highly skilled surgeons there,” Shannon Vivero said. “It’s because of the rarity of it, and there are three surgeons there.”

To sign up to become a potential live donor, visit henryfordlivingdonor.org. When prompted, enter Carlos Vivero as the recipient.

“Because he’s so young, to have a living donor would be ideal, because the longevity of a living organ is a decade to two decades longer than a deceased organ,” Shannon Vivero said.

Carlos Vivero talked about how this journey has affected him, mentally and emotionally.

“When I found out, I was very depressed,” he said. “I was in denial. I couldn’t believe it. I was a young person, I thought I was super healthy, and then I found out that my kidneys are failing. It was terrible.”

As time went on, he began to view things differently.

“As I started to come to terms with it, it kind of flipped a switch in my brain,” Carlos Vivero said. “Ever since I turned that switch on, so to speak, I told myself, every day, I’m just going to give it all I’ve got. I’m going to give my kids all I’ve got, I’m going to give my wife all I’ve got, and I’m going to give myself all I’ve got.”

He added that once he changed his attitude, life has been good.

“Since that happened, these last two years have been some of the best years of my life,” Carlos Vivero said. “We’ve done anything and everything that you can think of. We love to travel. We took our kids everywhere. Multiple trips a year.”

He and his wife own Vivero Industries, a web design and digital marketing agency in Alpena.

“We have grown that agency tremendously,” he said. “In comparison to two years ago, I think we have tripled our clientele.”

“We’re doing things with nonprofits,” Shannon Vivero added. “We’re doing things in the community. We’re making a difference … We’re trying to create a better world for our kids, through everything.”

Carlos Vivero described the whirlwind he and his family have been through over the last several years.

“It’s been one of worst, yet one of the best experiences of my life,” he said. “Just because it totally changed my mindset. And because of that, we’ve been able to do everything we’ve wanted to do.”

They both have been living sober for eight years now, and they promote addiction recovery in the community.

The Viveros have four children — Zander, 15, London, 11, Pierson, 9, and Irene, 6. They also have 10 small dogs, Teddy, Benji, Spike, Dolly, Winnie, Casper, Sheldon, Kimber, Buddy, and Dude, and four cats, Snowflake, Raven, Sylvester, and Rupert.

“I can’t complain, honestly,” Carlos Vivero said. “We live an amazing life.”