This Family Has Endured : Despite Loss of Business, Job, Kidney Disease, Son’s Illness, the Maciases Still Have Faith

In September, when her husband learned that he would probably lose his job as a VCR repairman, Kathy Macias thought that her family’s incredible string of bad luck had run its course.

“I thought nothing else can happen to us this year, because everything bad had already happened,” she said.

Kathy, her husband, Juan, and the couple’s six young children were looking forward to 1991. The new year, they hoped, was sure to bring them better times.

But 1990 was not through with the Macias family.

Just when the family learned about the impending layoff, just when Kathy Macias thought that nothing else could go wrong for her family, doctors told Juan that he was suffering from a potentially fatal kidney disease, focal glomerulosclerosis, that also afflicts his brother.

His employer “told me that I was probably going to lose my job. Then the doctor told me that, if I hadn’t come in when I did, the disease would have probably killed me in six weeks,” said Juan.

The disease struck Juan’s older brother, Henry, eight years ago. The brothers both fell victim to the mysterious illness when they were 32 years old.

Although they both suffered from kidney failure at the same age, Juan said doctors are not sure if the disease is hereditary or what its cause is. But doctors suspect the disease is inherited from a faulty gene passed on to them by their mother.

Juan’s illness confirmed their worst fears, said Kathy. He had been having up to 30 cramps daily, for several weeks, and complained of chronic fatigue.

“When he went to the hospital for tests, I prayed to God that it wasn’t kidney disease,” said Kathy.

The news was especially devastating for Juan because he has only one functioning kidney. Two years ago, he donated his right kidney to Henry, who lost both kidneys to the disease.

Despite his predicament, Juan finds humor in his situation.

“I’m in a very exclusive category,” he said. “It’s really rare for someone to donate a kidney and then have a kidney transplant. I’m one of a small number of people who can say he’s been at both ends. It’s an easier operation for the recipient.”

Juan’s illness was only the latest blow to befall the Macias family this year.

Earlier, the couple lost their video business and were left with a debt that will probably take 20 years to pay. In addition, 4-year-old Brian, who suffers from spina bifida and is paralyzed from the chest down, required hip surgery this year and was in a body cast for four months. The youngster has a twin brother, Paul, who is perfectly healthy.

And, recently, the family’s van required some expensive repairs.

“This had already been a tough year for us,” said Kathy. “It seems like everything has happened to us in 1990.”

Others might say that her family is facing a bleak Christmas. But Kathy thinks otherwise.

“This is probably going to be our best Christmas ever,” she said. “True, things are awfully tough for us. But a lot of people who have heard about our situation have been so kind to us. Our Christmas tree was donated to us. The staff at Children’s Hospital has helped us out with gifts for the kids. A teacher helped us out with Thanksgiving and Christmas dinner. Everywhere we turned, somebody was helping us. I consider ourselves very fortunate.”

Kathy Macias, 32, seemingly unflappable, juggles Brian’s thrice-weekly therapy sessions at Children’s Hospital and Juan’s dialysis treatments, also three times a week. Each treatment takes three hours.

Their 10-year marriage has been solidified by the crises they have faced, the couple said. They met at the old Doctors Hospital, where Kathy worked as a nurse’s aide. Juan, who was a baseball standout in high school and college, had gone to the hospital for an operation on his throwing arm. He said the California Angels were going to draft him, until they found out about his injury.

Kathy conceded that the strength she found to face the challenges confronting her family was not always there. A combination of her Catholic faith and family support has led her through every crisis, she said.

Money remains a problem. The family is living on Juan’s disability payments from the state, but most of that is eaten up by the $334 health insurance payments they have to make every month. They were forced to give up their Mira Mesa apartment and move in with Juan’s parents in Clairemont, where Juan, his brother and two sisters were raised.

“When all of this crashed down on us, I couldn’t get a grip. I was feeling depressed, because everything was caving in on us,” said Kathy. “I don’t know the reason for all this. We’re part of a bigger and grander plan. Everything is wrapped around God’s purpose.”

By contrast, Juan never lost his optimism. At the beginning of his illness, Juan’s outlook clashed with Kathy’s depression.

“We had a few arguments about this,” Juan said. “Money was tight. We have six children who still depend very much on us. I’ve always been a very positive person. I kept telling Kathy things would work out.”

Fortunately for the young couple, the Macias family pulls together in time of crisis. Juan’s parents, brother and sisters are very close. His parents mortgaged their home to help Juan and Kathy start up the video business that failed.

When the kidney that Juan donated to Henry failed, a younger sister, Maria, promptly donated her kidney to Henry.

“Henry is walking around with three kidneys, and only one is functioning,” laughed Juan.

When Juan fell victim to the disease, an older sister, Linda Sturtevant, offered him one of her kidneys. In a telephone interview from her Moreno Valley home, Sturtevant said she has already passed the first battery of tests for a donor.

“I’ve never given it a second thought. Doubt never crossed my mind. If I can help my brother, I will,” said Sturtevant. “I have a great deal of faith. I pray every night for guidance and strength.”

Henry Macias, an electrical engineer for Bonneville Power in Wennatchee, Wash., expressed admiration for his brother.

“My brother has fought an uphill battle. When I became ill, he stepped forward without hesitation,” said Henry. “When you come close to your losing your life, you learn to appreciate life more. My brother gave me a second chance at life, and I got a third chance from my sister.”

If Sturtevant goes through with the operation, every one of Juan’s siblings will be left with one functioning kidney. Donors and recipients have become so commonplace in the Macias family, that the procedure has led to a family tradition.

“This is a family thing,” Kathy said. “If you donate a kidney, you get taken out for a dinner of steak and lobster. It’s not a bad deal, a kidney for steak and lobster.”