Sharing Mayo Clinic: “Never Stop Fighting. Never Give Up”

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Sharing Mayo Clinic: “Never Stop Fighting. Never Give Up”

By
Dana Sparks

November 20, 2016

After years of kidney problems and a series of kidney transplants, Stacy Neumayer has finally achieved her goal of living the life she’s always wanted. — Photograph courtesy of Penni Pier.

Stacy Neumayer was a teenager when she received her first kidney transplant. Her health problems began when she was 4 years old. Over time, Stacy developed a condition called glomerulonerphritis, which causes inflammation in the tiny pockets of the kidneys that help remove excess fluid, electrolytes and waste from the bloodstream.

The illness affected Stacy’s kidney function, and she was put on dialysis until a donor kidney became available.

“Eventually my body and my kidneys started shutting down, so I went on dialysis until I had my first transplant,” Stacy says. “Unfortunately, my body rejected the donor organ before I even left the hospital, so it was back to dialysis.”

Dialysis had affected her spleen, and her spleen caused her body to reject the new kidney. That led to an extended period of dialysis waiting for another donated organ. But Stacy and her family remained strong in their belief that she would persevere and lead the life she always wanted.

Determined to prevail

What Stacy and her family couldn’t have known was that her long road to health would include six kidney transplants. In between almost every transplant, Stacy and her family had to work through the challenges of dialysis.

“Starting dialysis as a teenager, when you’re already dealing with all the emotions and stress of high school, was really hard,” Stacy says.

As Stacy grew up, graduated and got married, she went through the series of transplants, receiving both deceased and living donor organs.

“Throughout this process, I learned to be in tune with my body and alert to every little thing that was happening, because each rejection was a little different,” she says. “Over the years, we always had people telling us the worst. But I always had my family telling me a different story: that we were going to fight this.”

“I’m so thankful that I found Mayo Clinic, because they have really fought for me ... They fought for me like they were my family.” — Stacy Neumayer

Each transplant lasted longer than the previous transplant and improved her quality of life. Still, one goal eluded Stacy and her husband — becoming parents.

At age 40, Stacy underwent her fifth transplant — a donation from her younger brother. Because of her improved health status at that time, she and her husband were able to adopt a daughter and make their dream of having a family a reality.

“I’m so thankful that I found Mayo Clinic, because they have really fought for me,” Stacy says. “One of my physicians, Dr. Mark Stegall said, ‘We need to get you a kidney, so you can be a mom to that little girl.’ They fought for me like they were my family.”

Empowered to advocate

During her search for an answer, Stacy participated in a clinical trial for a drug designed to reduce antibodies that can cause organ rejection. When that didn’t work, Stacy’s care team at Mayo Clinic considered other approaches, including paired kidney donation. Although a match was found for Stacy in a paired exchange, at the same time a kidney became available from a deceased donor. Stacy’s doctors felt it was a better match. This most recent transplant, Stacy’s sixth, has been the most successful by far.

“Even early after the transplant, I was doing more than I ever was able to before. I can go shopping with my daughter. We’ve gone camping for a weekend. That never could have happened before, because I was always on dialysis, and that limited what my entire family could do,” Stacy says. “The freedom to be able to do what we want, to live and to go where we want is an amazing feeling. I’m going to be able to raise my child, and that’s exciting for me because I waited a long time to become her mom.”

Throughout her experiences as a transplant patient, Stacy says she’s learned many valuable lessons, including:

Your family can be an incredible source of support and strength and can keep you focused on your life goals.
Your physicians and medical care team are also your family and should fight for you.
You can learn from the experience of other patients and draw confidence from them to carry you through.
Don’t let fear get in the way of feeling better and living the life you were meant to live; talk to a nurse or other patients about your fears.
Ask questions, listen to your body, and be your own best advocate.

“I’m a patient who asks a lot of questions because my main job is to take care of this kidney,” Stacy says. “I owe it to the people who love me and have been there to support me. I may be hard to deal with as a patient sometimes because I ask so many questions and I’m so determined, but I’m my own best advocate. That’s my philosophy for survival.”

Focused on assisting others

Stacy is now looking forward to her daughter’s first year of school and being able to do what many parents take for granted, such as volunteering to help in the classroom. She also hopes to help other patients going through their own transplant journeys and to encourage people to consider organ donation as a way to help other families.

“I found a T-shirt before my last transplant that said, ‘No one fights alone.’ This became so important to me, because I’ve had so much support through my life,” Stacy says.

“I wear that shirt in honor of my family, the care team at Mayo and the family of the person who donated to me,” Stacy says. “Even if you don’t have extensive family support, you will not find the kind of treatment that you get at Mayo anyplace else. Anyone who goes to Mayo will find that they are not alone. The doctors, nurses and staff are all fighting for you.”

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