Locals Launch Kidney Disease Support Group
Writer / Gavin LaPaille
Photography Provided
Michael Saylor got his mulligan in life. Now he and his wife LeighAnn want to help give a mulligan to others.
Michael was 44 years old when he was diagnosed with IgA nephropathy, a kidney disease that occurs when an antibody called immunoglobulin A builds up in a kidney. The initial diagnoses for Michael didn’t provide much hope for the happy couple with three children, with doctors estimating he might live five to eight more years on dialysis.
The Saylors were determined to look for more options, visiting the Mayo Clinic in Rochester, Minnesota, and entering Michael into a clinical trial. After a year in the trial, Michael was advised to seek a living kidney donor for transplant within a year to prevent going on dialysis. LeighAnn immediately went to work, searching to find her husband a new kidney and documenting their journey using a Facebook page she created.
“Mike is looking at me like I’m not allowed to tell anyone about this,” LeighAnn says. “Well, I wasn’t going to find him a kidney if I don’t tell anyone. We started with family but we didn’t get any good matches. I created him a Facebook page. It was unbelievable how many people responded.”
Michael had a number of people come forward who were willing to be tested and who knew him from his days as a volunteer football coach at St. Margaret Mary. Their son’s teammate was able to connect the couple to Dr. Steve Woodle and the University of Cincinnati’s transplant program. This led to a match in Tim Clark, who Michael had known since their days of playing football at Trinity High School. On October 5, 2011, Clark successfully donated one of his kidneys to Michael.
“What’s amazing is when you wake up from that transplant you realize how sick you really were because you feel awesome with that new kidney,” Michael says. “People on dialysis, they have no life. It’s just hard on them, it beats them up. You can’t travel, you can’t go out and have fun. Each treatment just takes more out of you. Now I feel just as good as I did before.”
“Tim was probably the fourth person we tested,” LeighAnn says. “Tim’s wife had gone to Sacred Heart with me and she was reading my plea on Facebook. When you are down and you need someone to save your life, you think it’s going to be someone you’re with all the time. This is someone we might not have ever seen again. After, Tim said, ‘I have walked this walk with you. Think of all the other people out there that we have to help.’”
Clark was the owner of a restaurant named Mulligans, which the Saylors loved for representing the second chance Michael had received at life. The restaurant was struggling financially not long after the transplant, and LeighAnn was determined to help once again, this time going to the media and highlighting the story of two former Trinity alums on the eve of the school’s annual rivalry football game with Saint Xavier. The attention paid off for Clark’s restaurant, and also connected the Saylors to another couple whose 27-year-old son was in need of a kidney transplant. Mulligans began hosting meetings to help the family find their own living kidney donor.
These early meetings proved to be the beginning to what is now Mulligans Living Kidney Donors (MLKD), an informational support group for those living with end-stage renal disease. LeighAnn serves as president of the group that is committed to helping individuals get their lives back through a living kidney transplant, with Michael and Clark sharing their experiences along the way.
“It’s very rewarding,” Michael says of the experience helping others through the kidney transplant process. “When those people walk in the door because they don’t know what is coming and they have this scared look in their eye, that’s what I love the most. I can spot them from a mile away. I put my arm around them and I say we’re going to get through this. It just calms them down. I’ve had people tell me they will never forget when they met me. They were so worried about the unknown.”
MLKD helps individuals every step of the way, providing emotional support and grants for travel and medical expenses. The group also answers questions for those considering becoming living kidney donors, with some who have already donated a kidney available to speak with potential donors. To date, the group has assisted with more than 100 transplants across the United States. LeighAnn was recognized with the Bell Award in 2018, which recognizes individuals who have demonstrated the true spirit of Louisville through selfless volunteer efforts and seeks to inspire all residents to engage in community service.
“We’ve paid it forward,” LeighAnn says. “That’s what I will do until the day I die. The one thing that has come out of this group is to see Mike and the other people who have their lives back. There isn’t much information out there but we’re starting to get a lot of momentum. Not a lot of people understand this is an option for them, and how much their lives will be better if they have a transplant than if they sit on dialysis.”
The Saylors have been able to watch a kidney transplant take place in person, which both called an amazing experience.
“It’s crazy,” Michael says. “The minute you hook that artery up it goes from white to pink. It’s something to watch them do that. It comes to life right in front of you and starts making urine. I’ve been all over the world and seen some crazy things, but it takes your breath away. This guy has a life – he’s going to live. It’s amazing what we can do.”
Most of the transplants Mulligans takes on are living donor transplants, but the group has also done deceased donor transplants. Living donor kidney transplants often offer better long-term success rates than deceased donors and increase the odds of immediate kidney function. Living donor transplants also usually last twice as long as deceased transplants. However, not everyone has the opportunity to pursue a living donor transplant.
With Michael about halfway through the life expectancy of his donated kidney, LeighAnn knows this experience may get personal again for her family down the line. But with the help of the organization she founded, LeighAnn is optimistic about the future and the role MLKD plays in it.
“No one gets it like we do,” LeighAnn says. “There are about 50 of us that meet once a month just for the camaraderie of it. There are things that we can help each other with that no one else understands. There is nothing we don’t do. You could call us coaches or mentors during the kidney transplant process. The Kidney Registry reached out to us because we have one of the only organizations in the country that does what we do and does it successfully. No one is as successful as we are.”
