Des Allemands native’s genetic disorder requires kidney transplant

Testing underway for donor who can save his life

By the time Clay Usea was diagnosed with Berger’s disease, his kidney function was down to 25 percent and would eventually require a transplant.

It was shocking news to Clay, his wife, Tracy, both Des Allemands natives, and their children who thought everything was going great for them.

Soon after marrying in May of 2016, they had bought a house and moved to Galliano to be closer to Usea’s job with an offshore oil company. Tracy had found work as a helicopter dispatcher. They were doing well.

By March, their lives changed drastically when Clay was diagnosed with the disease.

“I don’t really think I really accepted any of it,” Tracy said. “It was like a dream. One minute your life is straight and going happy, and then everything is just up in the air. You don’t know what’s going to happen next, but we’re trying to remain positive.”

Tracy, an EMT who had worked with the Des Allemands Volunteer Fire Department for 11 years, insisted Clay see the doctor, and understood the implications of his the diagnosis.

Clay needed immediate dialysis and a kidney transplant.

“When we first found out all I could do was cry,” Tracy said. “I was upset. Since we met, everything just fell into place, but since this happened it was just devastating.”

Identifying the disease later in life is not unusual, which is also known as IgA nephropathy. It can be stealthy, typically showing few early signs and progressing slowly over many years. It occurs when an antibody called immunoglobulin A lodges in the kidneys and hampers their ability to filter waste from the blood, and there is no cure for it.

“It was devastating,” Tracy said. “But we have faith that it will all work out the way it’s supposed to be.”

By the time a biopsy pinpointed the cause of his illness in March, Clay was stage 4. Three weeks later, he was stage 5 and down to 12 percent use of his kidneys.

By April, Clay was offshore when his blood pressure skyrocketed and required he be hospitalized, she said. His doctor upped his medications, and soon after he had to have a catheter put in his stomach. He also suffers with severe cramps throughout his body.

The two are learning about home dialysis and later this month tests will begin to try to identify a kidney donor  among family and friends.

Tracy said she’s already decided to be the donor if she’s a match.

If not, others – only from Tracy’s family – and friends have volunteered to determine if they can donate. Because Berger’s disease is a genetic disorder, no one in Clay’s family can offer a kidney.

The help is needed.

“It’s a lot of worry, but I’m trying not to show Clay that I’m worried,” Tracy said. “They want Clay to stay calm and focused on getting better.”

But, with Clay being the household’s main income earner, Tracy added it’s tough not to worry. He is now disabled and seeking disability income. Their income was already precarious with him having to take a 30 percent cut in pay to keep his job in the oil field downturn, and medical bills are mounting.

“He’s okay with whatever the outcome is, but he’s worried about me,” Tracy said.

Their six children are helping organize and hold fundraisers to help ease the mounting medical bills.

“They’ve been trying to raise money to help their dad in this ordeal,” said Tracy of help that she readily acknowledges is much welcomed.

A benefit is scheduled 11 a.m. to 6 p.m. May 20 at the Des Allemands Volunteer Fire Department, 16960 Hwy. 90, Des Allemands. The event will feature items for sale including shirts, koozies and ink pens, as well as jambalaya plates with a cake and drink for $8. Donations can be made with Crystal Lynn at (504) 390-4090 or Cassie Hebert at (504) 559-0648 or at Capital One Bank under Clay Usea Donation Account.

But, even with these financial hardships, they are staying focused on helping Clay physically.

If the kidney comes from a family member or friend, the transplant could take six months to a year to get done. If the donor is not a family member or friend, the process could take three to five years.

“I’m scared,” Tracy said. “He’s been the best thing to happen to me in my whole life other than my kids, but everything has always fallen into place and I think it will fall into place this time. We have amazing family and friends, and our kids have been awesome.”

 

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