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Patient Turns to Social Media to Find Living Kidney Donor

 

At 33 years old, Amanda Keller is looking forward to celebrating a first birthday of sorts, thanks to her kidney transplant at UAB Medicine’s Comprehensive Transplant Institute (CTI) last year.

Coincidentally, Keller’s transplant journey began on her actual birthday.

“I have a different story than most in that I didn’t know that anything was wrong with me. It was on my 32nd birthday on November 7, 2016, that I went in for regular testing. I felt like something was wrong, but I definitely didn’t think anything was that wrong,” Keller says. “I found out that day that not only was my kidney not functioning, but I was in stage 5 renal failure. I was immediately put on the transplant list and needed to find a kidney donor.”

Keller says it was shocking to hear the diagnosis at such a young age.

“It was really stressful. At 32 years old, most of my friends didn’t even believe in going to the doctor for regular checkups. So to hear this health news, it was devastating,” Keller says. “My first thought was, ‘How am I going to continue to work and do what I need to do and also take care of myself?’ I went into a reactionary mode of just getting through it, but I honestly didn’t have that much fear. I felt like I was getting such great care from the UAB Medicine team that I wasn’t concerned about the medical side. It was more about maintaining a sense of normalcy in my life.”

Finding Sunshine

Keller was placed on dialysis as she worked to find a living donor. She says treatment was one of the hardest parts of the process, but she always tried to focus on the bright side of her care.

“Dialysis can be painful and difficult and awkward. At 32, you don’t expect to have to have a tube sticking out of your stomach and to have to cut off your social schedule by eight o’clock every night to go home and hook up to this machine. So for me, it was really important to maintain a sense of humor,” Keller says. “When I would see the nurses, they were always trying to get me to make social plans, and I would say ‘No, I love dialysis. I’m really grateful because I have an excuse to go home and be on the couch and just do nothing.’ It was just about finding that spot of sunshine in whatever I was doing.”

Keller says it was those moments of laughter with her UAB Medicine care team that meant the most during her treatments.

“I think the best experience was the random laughter I shared with the nurses and doctors at UAB Medicine. You would go to a clinic and be in a place that is very medical; you’re there to give bloodwork and talk about your numbers. Yet in the midst of that process, which was serious and sometimes not great, it was wonderful to laugh about something small and talk about personal things. It made you really feel like you had a one-on-one relationship with the doctors and medical team,” Keller says.

The Power of Social Media

While on dialysis, Keller also was waiting for an organ donor to be found, but her estimated wait was eight years. The Kidney Transplant Clinic at UAB Medicine urged Keller to search for a living donor by sharing her story as much as possible. That’s when Keller and her friends turned to social media.

“I’m the director of a local youth organization, and I’m deeply rooted in the Birmingham community. It was actually because of the grassroots work I do that I was able to find a donor. So many in my community shared my Facebook page, Kidney for Amanda, and it was a friend of a friend of a friend that saw my story on the page who wanted to help. I truly believe that if it weren’t for the work I’m doing and this amazing community that I’m involved with, I wouldn’t be here today,” Keller says.

Once her living donor was matched, Keller had her transplant surgery just a few months later. The procedures for her and her donor were successful. Keller says she can’t put into words how much UAB Medicine meant to her during this process.

“If the doctors and nurses sat down in front of me right now, I would cry, and I mean ugly cry. I just don’t know how to thank them enough for all of their help, concern, care, and warmth. There aren’t enough words to thank them for being the people that they are and being as wonderful as they are,” she says. “The CTI team is outstanding, and from the first moment I met with the doctors, I just knew I was in good hands.”

Keller says she is dedicated to taking care of her new kidney, and while another transplant may be needed 20+ years from now, she says she knows UAB Medicine will be there for her in the future as well.

“I want to keep this kidney happy and healthy for as long as possible. I know that down the road I may need another transplant, and that’s okay. I’ve had such a good experience at UAB that I know it will be okay then as well. I already know how to face it and get through it,” Keller says.

“I’m living a very normal and happy life. My future is healthy, happy, wonderful, grateful – all those things,” she says. “I refuse to use just one word to describe what’s ahead for me.”

Paying It Forward

Since her transplant, Keller has helped others on the kidney donor waiting list create social media campaigns similar to hers. She says it helps her to know that others can benefit from her work.

“The kidney clinic actually reached out recently and asked if they could copy the website to offer it as a resource for other patients. I feel certain it will help someone, and even if it helps just one person, I’m thrilled,” Keller says. “It’s so meaningful to be able to reach out to people going through a similar situation to mine and say, ‘It’s okay. I’ve been through this. I’m happy and healthy,’ and then be able to give them concrete information to use in the future. It’s been really neat to help others like that.”

Keller says she hopes more people will consider giving the gift of life through organ donation.

“If you’ve ever considered being a donor, please stop considering and do it. It changed my life, and it can change so many other lives. It took my life from being on the waiting list for eight years to receiving a kidney from a living donor in a matter of months,” Keller says. “Being a living donor, it sounds like a lot, and it is. But it is also life-changing, and you’ll be doing something for someone who will be eternally grateful. So please consider being an organ donor, and more importantly, please consider being a living donor.”