DONOR INFORMATION
American Transplant Foundation, www.americantransplantfoundation.org
National Kidney Foundation, www.kidney.org
Organ Donor Registration, www.organdonor.gov
Matt Schneider feels like a cat with nine lives. His most recent rebirth was Feb. 25, 2016 — the day of his fourth kidney transplant.
He was about to drive to Piedmont Hospital for an appointment when a donation coordinator from the hospital called.
“She said, ‘I have a kidney for you. Do you want it?’” recalled Schneider, of Alpharetta. “I said, ‘Sure, I guess I’ll take one.’”
Schneider, 39, awaited that call for 13 months, ever since his kidney failed on Jan. 22, 2015. During that wait, he endured three-hour dialysis sessions, three times a week. Though the routine was exhausting, Schneider did not slow down much. Every summer, he volunteers as a counselor at Camp Twin Lakes, a program for kids with serious illnesses, disabilities and other challenges, and he continued to go even after his dialysis appointments.
When he received the call that his need for dialysis might be over, he couldn’t believe his fortune.
“I drove to the hospital immediately, they began a series of tests to be sure my antibodies wouldn’t attack the kidney and they told me to prepare for an early morning surgery for the next day,” Schneider said.
He had plenty of family and friends who were willing to donate. He assumed this kidney was from someone he knew, but that wasn’t the case. The kidney came from a female organ donor in California who had just died.
“I didn’t sleep at all the night before surgery, and that’s not because I was nervous,” said Schneider. “I couldn’t stop thinking about the donor and their family. … I knew there was another family out there going through the worst time of their lives.”
There's a chance Schneider may never know who donated the kidney. He plans to write a letter and pass it along to the United Network for Organ Sharing, the organization that matches donors to recipients.
“I want to thank the family for the gift they gave me,” said Schneider. “I feel horrible for whatever happened to their loved one, and I want them to know I’m so grateful for this gift of life. If they want to write me back, they can; if they want to throw the letter away, they can.”
Schneider was born with Eagle-Barrett syndrome, also known as Prune Belly syndrome. It occurs in one of every 30,000 to 40,000 births. He has no frontal abdominal muscles, so he can't physically sit himself up without rolling or using his arms. The diagnosis has affected his hips: Both are dislocated. He walks fine but refers to his stride as a waddle. He has scoliosis and lordosis, which means his spine curves to the side and it also curves inward. Chronic renal failure is common with Eagle-Barrett syndrome.
Schneider received his first kidney donation from his mother in 1987 when he was 11.
“The mom part was the fearless part,” said Susan Schneider, Matt’s mother. “I would do anything to save my child. He was so sick and I didn’t hesitate to do what I had to do. The surgery used to be more difficult. It was especially tough on the donor. But these days, it’s a laparoscopic procedure and you’re generally back to normal within six weeks.”
When Susan’s donated kidney failed in 1994, Schneider had another transplant. This time, his father, Kevin, was the donor. That kidney failed in 1999, and Schneider’s younger brother, Kevin, donated his kidney.
“I’ve had 20 surgeries, give or take,” said Schneider. “Beyond my transplants, I’ve had bladder surgery, knee surgery, fistula repair, the list goes on. Though I believe the diagnosis has made me a better person, it’s not always easy. Being different is hard. Because I look different, people know something is up. I try to be open and share when I’m asked questions, because I hope my story will persuade them to be an organ donor one day.”
Besides his camp volunteer work, Schneider enjoys spending time with friends and taking trips to Savannah to see his parents, but he wishes some things could be different.
“I’ve thought about what life would be like if I didn’t have this,” said Schneider. “I certainly wouldn’t be single. I’m a genuinely good person, but people can’t look past the physical and I’m very self-conscious.”
Schneider has only ever met two people with his same diagnosis, but through camp, he’s had plenty of friends with other diseases who were in need of a transplant.
“I’ve been to at least 40 funerals, some of them very close friends,” said Schneider. “When one friend, Emily, passed away, it changed my life because I was starting to get sick at that time. She passed from kidney disease. I had a panic attack because I just knew it was coming for me next.”
But it didn't and Schneider remained dedicated to spreading the word about being a living donor. (In fact, April is National Donate Life Month.) He's in the midst of creating a comic book about kids who get superpowers from dialysis and infusions. The characters are based on kids from camp who passed away.
According to the National Kidney Foundation, there are currently over 100,000 people in the United States awaiting a kidney transplant. There are 3,000 names added every month.
“Through the generosity of four people, I have been able to live,” said Schneider. “There are so many people out there who are surviving because of dialysis. I’m grateful for it, but it’s a really horrible thing to endure. … My mom, dad and brother all live normal lives after giving their kidneys. People need to know that their quality of life won’t change if they donate a kidney.”
Susan is proud of her son’s advocacy efforts and even more proud of the strength he has shown throughout his struggles.
“When he was born, they said he might live just a year,” said Susan. “They told us to take him home, love him and hope for the best. At age 1, they said he might make it to age 4. They told us he wouldn’t walk because of his condition. It’s been awful for Matt, but his attitude never shows it. He’s almost 40 years old. He keeps fighting the battle and it’s unbelievable to watch. We’ve always told him ‘go for it,’ because every day is a gift, and that’s just what he’s done. I’m the proudest mother there is.”
