Butler Twp. man seeks kidney
Paige Volek and Adam Fair were married in 2017 and live in Butler Township.
They celebrated the birth of their only child, a son named Elliott, in August.
In October, Volek noticed Fair was slowing down. In November, he went to a nephrologist who told the couple Fair's kidneys were functioning at 8 percent and he needed to start dialysis.
By Thanksgiving, Volek and Fair learned he needed a kidney transplant.
“I was told that I needed to be the voice,” Volek said.
Alport syndrome
Fair has a condition called Alport syndrome. Alport is genetic and is classified by kidney disease, a loss of hearing and eye abnormalities.
Though Fair didn't have a name for his condition until a few years ago, he always knew he had kidney trouble.
Fair, who is the grandson of former Pittsburgh Pirates pitcher Ronnie Kline, is an assistant grocery manager for Giant Eagle and works 45 hours a week. Volek teaches English to Chinese students online.
Fair underwent surgery last fall for an abdominal catheter. The tube that goes into his abdomen is cleaned and bandaged at all times and helps him do peritoneal dialysis.
“It can be done while you're sleeping,” Volek said. “It's more gentle on his body.”Volek and Fair are careful to keep the catheter tube's exit site clean and dry. This is one of the most important parts of Fair's treatment.“He's usually in pain from that,” Volek said.In the weeks following Fair's catheter surgery, Volek was working from home at night so she could care for Fair and Elliott during the day. Fair was off work and under a lift restriction for two months. He couldn't even lift Elliott.Matching antibodies“We weren't in the best of spirits,” Volek said. “It's gotten a lot better.”They have been working with Allegheny General Hospital to manage Fair's illness. Volek said the hospital has helped them understand what needs to be done to help find a kidney.For instance, medical professionals have taught the couple donors don't have to match blood type. They have to match antibodies. And it's possible for people to live with only one kidney.“They're not going to take a kidney if you can't last on one,” Volek said. “They really try to work with you.”Fair began testing for the transplant process in February, a couple weeks before the coronavirus outbreak in Pennsylvania. Volek said Fair doesn't fall into an at-risk demographic for COVID-19.“As long as Adam keeps his (catheter) exit site sterilized,” Volek said.Fair will become at-risk when he undergoes transplant surgery. He'll need to take immunosuppressant drugs — or medicine that prevents immune system activity — to manage the transplant.Though the couple hasn't been notified by AGH that the COVID-19 outbreak will disrupt the transplant process, Volek says there's always a chance.“We might be pushed to the back burner,” Volek said.Living donor soughtVolek is getting tested April 6 to see if she's compatible enough with Fair to give him a kidney.Volek said a kidney from a living donor can last twice as long as a cadaver kidney, which Fair will have to pursue if he doesn't find a match.The wait for that can be up to five years, according to Volek. But Fair needs a kidney now.“The sooner the better,” Volek said. “You can develop complications the longer you're on dialysis.”Volek said Fair does have the option of a “paired donation.”Also called a “kidney swap,” Johns Hopkins Medicine says a paired donation happens when a living kidney donor is incompatible with the recipient and exchanges kidneys with another donor/recipient pair.This procedure could improve Fair's chances of getting a kidney soon.“It doesn't matter if you're a match,” Volek said.The couple is now awaiting final insurance approval for the transplant process.Community supportBeing a new mother and navigating Fair's condition can be draining, Volek said. She's learning to balance both without putting additional stress on her husband.“(I'm) just trying to stay upbeat,” Volek said.If there's one thing Volek wants to tell families facing a similar diagnosis, it's that there are support communities everywhere.Volek and Fair have seen this through their Facebook page “Help Adam Get A Kidney” and GoFundMe site.Volek said when she first started spreading the word about Fair's condition, she wasn't sure if people would respond.They did.“People are more willing to help than you realize,” Volek said.Those who want to know if they're a possible donor should visit agh.donorscreen.org.
