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Friend’s Selfless Decision Saves Life: Tess and Ann’s Story

 

What would you do for a friend? Most of us say we’d do anything for those that matter most to us, but actually doing so is another thing entirely.

Ann Rayburn and Tess Bourge have been friends for years. Rayburn says Bourge was the first person she met when she moved to Birmingham. So when Bourge’s health started to deteriorate before her 60th birthday, she knew she’d need her friend’s support to get through it. What she didn’t realize was that Rayburn would be there for much more than just emotional support; Rayburn gave her a second chance at life.

Fighting Family History

At age 18, Bourge was diagnosed with polycystic kidney disease (PKD). PKD is an inherited disorder that causes clusters of cysts to develop in the kidneys, enlarging them and reducing their function over time. Bourge had seen her entire family suffer with PKD. Her mother was on dialysis for 12 years, her sister was on dialysis for four years before she received a kidney transplant, and her brother also received a kidney transplant. Given her family history, Bourge knew she likely would need a transplant eventually, too. But since she couldn’t find a living donor, she thought she would have to go on dialysis first.

“My husband and son were not eligible donors. I didn’t ask anyone else. I always thought I would be on dialysis and was just putting it off for as long as I could,” Bourge says.

Bourge says her exceptional care at UAB Medicine helped delay the progression of her PKD for many years.

“I’ve been at UAB since 1979. They started me on the best protocol in the country. In contrast to my siblings, who weren’t here at UAB, my disease progressed more slowly, and it’s one of the reasons why I was able to wait until I was 60 to have a transplant,” Bourge says. “Being at UAB has made a difference in my life, to be at a medical center that has state-of-the-art care. I know how fortunate I was for that reason.”

A Selfless Decision

At age 59, Bourge’s condition began to decline rapidly, but a phone call from an old friend changed her life forever.

“I’ve known Ann Rayburn a long time. She kept asking for two or three years how I was doing, how I was progressing, where my kidney function was at,” Bourge says. “One day she called me right out of the blue, and she said she’d been thinking for a while that she would like to donate a kidney to me. I remember telling her I’d really have to think about it. I knew what it meant for a donor to give a kidney, and I was worried about having a friend be my donor. Her daughter was approaching high school, and I was concerned that if something happened, her daughter would be on her own. It was just very overwhelming.”

Rayburn, however, says she didn’t share Bourge’s concern.

“I knew Tess and her family history. It was always in the back of my mind that I wanted to donate my kidney to her,” Rayburn says. “I’m glad dialysis exists for people who need it; it saves lives. But if I could keep Tess from doing that, why wouldn’t I? I wasn’t worried about it at all when we first talked. The first thing I remember her saying is, ‘I couldn’t ask you to do that.’ I said, ‘You didn’t ask, I offered.’ I never really thought about not doing it.”

Finding Hope

Rayburn was tested, and she was found to be a match for Bourge. They underwent the transplant surgery in June 2016. Both women say they received exceptional care at UAB Medicine’s Comprehensive Transplant Institute (CTI). “It was a wonderful experience, and you can just tell that everybody’s rooting for you,” Bourge says.

“My care was great, and I’m a tough audience. I’m a nurse. I’ve worked in ICUs. I’ve worked for UAB as part of the Alabama Organ Center (AOC) for 20 years,” Rayburn says. “My experience during the entire living donor process made me proud to say I’m part of the UAB team.”

Doctors say both Rayburn and Bourge are now in great health after surgery, especially since the transplant took place before Bourge had to start dialysis. Bourge says Rayburn’s incredible generosity and selflessness greatly improved her quality of life.

“Thanks to Ann, I will have another 10 to 15 years. It is life-changing and life-affirming. I wonder if I could have made that decision. It almost feels selfish to describe how I feel. I’m just so glad that Ann is doing well,” Bourge says. “She’s changed my entire quality of life, and I think donation is so important, because a living donor could give someone else the same chance at a full life that Ann gave me.”

Bourge says she encourages others who are waiting for a transplant to never give up.

“Medicine is changing, even with PKD. They’re doing major research at UAB. Transplant is a whole new world, and there’s hope now,” Bourge says. “Hope is the one thing you need. You’ve got to be positive and hopefully get to a place that’s going to give you the best care. Certainly for me, UAB was that place.”

Ordinary People

Rayburn says becoming a living donor impacted her life greatly, too. She says it helped her in her work at the AOC, and she advocates that everyone should consider becoming a living donor.

“From someone who has done it, I have no regrets. People ask, ‘Does it hurt?’ Well, yeah, they took my kidney out. It hurt, but I felt better within a matter of days. I have no change in my quality of life. I see the little scars, but if it weren’t for that, it’s like I never did it. I feel the same as I did before the surgery,” Rayburn says. “I don’t think about it as saving her life. I don’t really feel like I’m all that special. It just seemed like the right thing to do. I joke with people that I can’t cook, so I’d rather give you a kidney.”

“Being a living donor doesn’t mean you have to be some extraordinary person,” Rayburn adds. “You just have to be able to look outside yourself. There are a lot of people like me, ordinary people who are raising their families and working, who could take four weeks out of their lives and donate a kidney and never look back.”

The Case for Change

Rayburn and Bourge are impacting the transplant world by influencing policy changes statewide. When Rayburn donated her kidney to Bourge, she had to use her personal, vacation, and sick days to take time away from work. Robert Gaston, MD, and Margaret Tresler, MPH, in the UAB Department of Surgery learned this, and they worked with Rayburn to lobby UAB to provide paid leave as an additional incentive to those who wished to donate an organ or bone marrow. In March 2017, the UAB Benefits Committee extended employee benefits to include four weeks of paid leave for those who want to be living donors for solid organ transplants and one week of paid leave for bone-marrow transplant donors. But Tresler, Gaston, and Rayburn didn’t stop at UAB; they pushed the state of Alabama to adopt a similar policy for all state employees, an idea that became a reality in October 2017.

“Being a living donor is not supposed to cost you anything or impact your life in that way. One of the great things UAB has done is make it easier for its employees to be a living donor. I appreciate that UAB makes that commitment to the donor, which makes it easier to help people like Tess,” Rayburn says.

Bourge says she and Rayburn will remain connected forever, both through the organ transplant and their friendship. Organ donation, she says, means the potential for a brighter future for her and others on the kidney waiting list.

“It is hope – hope for the future. It’s hope for other people who may get to live a full life,” Bourge says. “For me, it’s a hope of being there and seeing a grandchild. It’s being with my husband a lot longer. It changes your life, and that’s what my hope is – to stay happy and healthy and live more years. That’s all thanks to Ann and UAB Medicine.”

Click here to learn more about UAB Medicine’s Comprehensive Transplant Institute and how you can share the gift of life by becoming an organ donor.