Local family with rare kidney syndrome looking for donor

Local family with rare kidney syndrome looking for donor

John Zhawred sits with his family at his Smithfield home. From left, Mark Bouchard, Mackenzie and her mom, Sahvanna Zhawred Davison, John Zhawred, his grandson Finley, Wendy Zharwed, her granddaughter Ryleigh, and Lisa Bouchard. (Breeze photo by Jacquelyn Moorehead)

SMITHFIELD – John Zhawred needs a kidney and his sister, Lisa Bouchard of Cumberland, will do anything to help him find one.

A 49-year-old Smithfield resident, Zhawred was diagnosed with a rare genetic kidney disease called Alport Syndrome in December of 2015 during a routine physical with his doctor.

His symptoms of microscopic amounts of blood in his urine had gone undetected for years, and the accompanying hearing loss was thought to be a side effect from years working at Miller’s Auto Body in Cumberland.

During the doctor visit, his doctor noticed high levels of creatinine, a waste product from the breakdown of muscle tissues filtered through the kidneys, at three times the normal level. Zhawred, a mostly healthy family man who led an active lifestyle working two jobs, had kidney failure.

“I found out about the kidney disease, and one year later I was on dialysis,” he said.

Zhawred spent nearly three years doing at-home peritoneal dialysis, which uses the abdomen to remove toxins from the body in those with kidney failure. He can no longer work and is on disability.

He now undergoes hemodialysis, where the blood is circulated and cleaned outside of the body, three times a week for three hours at a time in a clinic in Johnston.

“I’m tired and frustrated. I can’t do what I used to do,” he said.

The new treatments require special medication that comes with a list of complications that leave him tired. The father of two and grandfather of three said missing out on family occasions has been hard on him.

There is no cure for Alport Syndrome, and treatment includes dialysis or transplant.

Bouchard is leading a campaign to help her brother find a living kidney donor. She said she’s made flyers and will do anything to get her brother a kidney.

“It’s his life. I’m not going to stop until he gets a kidney,” Lisa said.

Alport Syndrome is genetic, passed down the family line. In general it affects men more severely than women. Their mother, an Alport carrier, had a kidney removed 15 years ago due to an unrelated tumor, but is healthy with her remaining kidney.

“We are all born with an extra kidney, and you can live a happy, healthy life with only one after becoming a donor,” Bouchard said.

Both of Zhawred’s children, Sahvannah and Jacob, carry the gene. All have the telltale blood in their urine, but only John is experiencing kidney failure.

Because of this, his family members can’t donate a kidney, though Sahvannah tried.

“I did the test and matched but I got a call two days later from the doctors saying no, he’d just get it back,” Sahvannah said.

Speaking with The Valley Breeze & Observer from Zhawred’s Mann School Road home, Bouchard and her husband Mark joined Zhawred’s family to share his story. John’s wife Wendy, who does not have Alport Syndrome, survived cancer 11 years ago and can’t donate.

Two of his grandchildren, Ryleigh and Mackenzie, sat between John and his sister as he talked about his search for a kidney. He is on two donor lists, including in New England and Florida.

Many factors contribute to how long a person has to wait on the donor list before receiving a kidney. Only two doctors in Rhode Island perform the organ farming surgery when a patient dies and decides to donate organs, which can lead to some missed opportunities.

In New England, the average wait time is seven years. In Florida, it is approximately two-and-a-half years. If a match comes up there, he’ll need to fly to Florida as soon as possible, as organs last up to 48 hours post mortem. Then, he’d stay in Florida for an eight-week recovery period before returning home.

“The whole process could be very expensive,” Zhawred said.

His insurance covers all medical expenses associated with living donor match testing and surgery. And, if a donor ever needs a kidney in the future, they’re moved to the top of the wait list, he said.

While Alport Syndrome is rare, with approximately 30,000 to 60,000 people in the U.S. carrying the disorder, rarer still is the number of adults with Alport’s that result in end-stage renal failure.

Zhawred said he wants a kidney so he can get active again. He said he’d love to continue going to his grandchildren’s swim and cheerleading competitions and get back into the auto body shop.

“Hopefully, I can get back to that, get back to work,” he said.

His Rhode Island Hospital kidney adviser, Sarah Gibb, is helping Zhawred and Bouchard in their search for a donor.

A match needs to be blood type O+ or O- between the ages of 18 and 70, in good overall physical and mental health, and free from uncontrolled high blood pressure, diabetes, cancer, HIV/AIDS, hepatitis or organ disease.

Qualified parties can call Zhawred at 401-479-3372.