Never lose hope.
That's Carol Mainolfi's advice to anyone who is waiting for a kidney transplant. She would know – she received one after three years on dialysis and one failed transplant.
"I feel like a different person," said Carol, who received a kidney through a paired kidney exchange last June. "I am slowly getting my life back. I'm appreciating the freedom from dialysis and a second chance at life."
Since the 1980s, Carol's health had always been up and down, with frequent urinary tract infections (commonly known as a UTI) leaving her hospitalized on more than one occasion. At the time, her doctor told her she had sponge-like kidneys that were susceptible to infections and were symptomatic to UTIs. He had also told Carol her kidneys were large, most likely because "she was tall."
Fast forward to 1994, the day before her son Gregory was born. During a routine ultrasound, cysts were discovered on his kidneys. One week later, both Carol and her son were diagnosed with polycystic kidney disease (PKD).
Prior to her diagnosis, Carol had never heard of PKD. She's been unable to find history of the disease anywhere in her family, leading her to believe it was a spontaneous mutation.
Carol, a fulltime second grade teacher, began to feel the symptoms of renal failure in 2007. Her doctor told her there would be a day when she'd just know [it was time to go on dialysis]. "For me, that day came before the new school year started," said Carol. "Reality set in and I just knew – it was time."
After starting dialysis in August 2009, she immediately got on the transplant waiting list. Several relatives and friends, including her husband Matt, tested to be a match. Unfortunately, no one was.
It was then the Mainolfis decided to join the paired kidney exchange program at the University of Maryland Medical Center. A paired exchange, also known as a "kidney swap," occurs when a living kidney donor is incompatible with the recipient, and exchanges kidneys with another donor/recipient pair.
Matt wanted to be a part of the process from the get-go. "He always knew he was going to be the one to fix it," said Carol. "He's the fixer of the family."
However, there was one concern. Their only child had PKD – which meant one day, he would most likely need a kidney transplant. Matt has the same blood type as his son, and would probably be a good match. So there was a choice: either donate a kidney to help Carol or donate a kidney directly to Gregory.
"It took a lot of soul searching," recalls Carol.
Ultimately, they determined that Gregory would need a kidney later in life, so he had more time. They decided to continue as planned in the paired kidney exchange program.
In November 2010, Carol received a kidney, but a blood clot formed and it had to be removed the next day. Carol and Matt were told this happened to less than one percent of the population.
"All was falling into place so well. Losing the kidney was heartbreaking."
Carol was forced to go back onto dialysis and wait another two years before a new match was found. She received another kidney on June 12, 2012. Matt donated his kidney to another recipient on August 28.
Carol believes it takes a special person to do what her kidney donor and her husband did. "They made this possible," said Carol.
And because of Matt's selflessness, they'll not only celebrate their 24th wedding anniversary this summer, but also Carol's one-year transplant anniversary.
"I'm so blessed that Matt came along on this journey with me. He helped save my life – and a life of another."
Today, Carol is feeling better than ever and credits her strong support system. "My biggest challenge was dialysis, and what it took from my daily life," recalls Carol. "It was nice to have people in my life that cared and supported me. It made all the difference."
Carol and Matt are now sharing their experiences, hoping to help and educate PKD patients and others going through dialysis. They recently became the new Chapter Coordinators for the Baltimore Chapter of the PKD Foundation. "We always felt it was our calling to help, but we were never able to do it in the past," said Carol. "Now is the perfect time."
Through her own experience, she tells people to always remain positive, that giving up is not an option.
"Your time will come. Maybe not tomorrow, or next month, or next year – but it will come. Never lose hope."
Learn more about paired kidney donation at pkdcure.org/learn/paired-kidney-donation.