HAMILTON — Just a couple months after setting up a nursery for their newborn, Arie and Joy Pekar dedicated another room in their home to dialysis treatment.
Arie started dialysis on June 19 and, on June 23, he and Joy welcomed a baby, Benjamin, who arrived three weeks early, into their home.
Earlier this month, Arie started home hemodialysis so he could spend less time away from his family.
Arie has polycystic kidney disease, which causes cysts to develop and interfere with the organ’s ability to filter waste from the blood. In addition, the disease makes you exceptionally tired, as the kidney is responsible for creating a hormone that triggers the body to create red blood cells. It can also cause nausea, skin conditions and trouble with digestion.
Arie’s mother, Ilana, has had the disease for decades, and after learning he had very high blood pressure, Arie was tested. At age 21, he found out he had inherited the genetic condition.
Because Arie, now 33, was diagnosed early and while he was in good health, doctors were optimistic about his prognosis. But despite preventive treatments and a healthy lifestyle, his disease is progressing quickly.
Arie and his mom both need kidney transplants. Friends and family have been tested as donors and ruled out.
Since the couple went public with their story last January, several people have come forward for testing, but so far, no one has been a suitable match.
His doctors had hoped Arie would get a transplant before he needed to start dialysis, as that would help his prognosis. But this spring, it became clear he would need to start the treatment. Dialysis doesn’t cure kidney disease or make kidneys well again, and it doesn’t fully replace kidney function.
During his first dialysis treatment, Arie became nauseous, couldn’t hear and fainted a couple of times. Since then, it has gotten better. But the process still leaves him exhausted, extremely hungry and usually with a bad headache. He goes through dialysis twice a week for three hours at a time.
“It is emotionally hard, too. He has seen his mom live this life,” Joy said.
“I can’t imagine what it must be like for him to look down the road and say ‘This is what my life will be like and to have his life expectancy shortened tremendously.’ And to look at a new son and think those things.”
A day before Benjamin’s brit milah, Arie experienced a ruptured cyst, which can happen with his disease.
A rupture leaves him in extreme pain and sometimes incapacitated for a week. Fortunately, this time, the pain subsided somewhat, and he was able to be part of the special occasion.
It can all be difficult to balance.
Arie tries to work as much as possible – he owns a security business – while fitting in dialysis, medical appointments and finding time to be with his wife and baby.
This summer, the family rented a cottage for a week, and he had to visit the local hospital for dialysis. He couldn’t swim in the lake for fear of infection at his access site. He will never be able to go anywhere without being able to get dialysis, making travel out of Ontario difficult and very expensive.
“We would have never thought we’d be here at this point in our lives. Maybe in 20 to 30 years, but not now,” Joy said.
“Our lives look very different than most people our age. But we will keep sharing our story and hope someone, somewhere will work out.
“We are so incredibly touched by the people who have come forward. It is amazing that people would take that step.”
The Pekar family encourages anyone interested in more information to visit www.facebook.com/MomAndMeNeedAKidney or to email email@example.com.