The gift of time

Tess Bourge always had a feeling she would eventually be one of the thousands of people each year who need a kidney transplant. 

Her family has a history of polycystic kidney disease — her brother and sister have both had transplants — and her mother has been on dialysis for 13 years. 

“I’d been around it all my life; I was pretty realistic about it,” she said. “I was very lucky to go for a long time without it.”

Bourge was born with the disease, and as the years wore on, it became increasingly clear her time was running out.

Although the disease affects everyone differently, it generally causes cysts to form on the kidneys, which leads to renal failures during which the kidneys stop functioning — as happened with Bourge. When the renal failures start to happen too rapidly, a kidney transplant or regular dialysis are necessary to keep living. 

With her son having chronic psoriasis, her granddaughter being too young and her husband recently diagnosed with diabetes, Bourge no longer had anyone in her family she could ask to donate a kidney. 

Instead, she could choose between adding herself to the Alabama’s organ donor waiting list—which Bourge said can take between three and five years — or living on dialysis, which would have serious long-term effects on health, as she saw in her mother growing up.  

“I no longer had a donor,” she said. “The list has grown tremendously… there’s a lot more people, especially in the South, that need transplants. People from all over the country come to get a transplant. More and more people are getting sick from different diseases.”

An unexpected act

In the fall of 2015, Bourge said she was catching up on the phone with her longtime friend Ann Rayburn when Bourge told her about the situation. Rayburn, who lives in Vestavia and also works as a nurse at the Alabama Organ Center, in addition to being the director of education and referral services, said it was always in the back of her head that Bourge might need to be transplanted at the University of Alabama in Birmingham. 

UAB is one of the three largest kidney transplant centers in the country, and averages over 300 kidney transplants per year.

It didn’t take Rayburn long to make her decision. 

In less than 24 hours, Rayburn called Bourge back and told her that she wanted to be tested to donate her kidney.

“She said to me, ‘I can’t ask you to do that,’ and I said ‘Well, you didn’t ask me, I want to do this for you, I’m healthy, I think I can do this for you,’ and then I just kind of put it into motion,” Rayburn said. 

Bourge said she was completely surprised, and never knew that Rayburn had ever considered being a living donor for her.

“She just overwhelmed me,” Bourge said. “It’s a hard thing for people to ask, and it really means something for someone to make that decision to help someone, to save someone’s life.”

Bourge said it took her almost a year to be able to accept the offer, and it wasn’t until increased renal failure, memory loss and a serious infection causing her health to rapidly declined that she realized “she didn’t have many other options.”

“I never thought I would be well enough for my granddaughter’s graduation, much less to see her go on to college or to travel or stuff like that,” Bourge said. 

A living donor

Rayburn and Bourge underwent the kidney transplant surgery on June 26, 2016, but beforehand Rayburn went through her own process to be a living donor at UAB.

The process started by completing an online form with basic medical history, Rayburn said, in addition to specifying that she wanted to donate the kidney to a specific individual instead of whoever is next on the waiting list to receive one.

Rayburn said that two days after she submitted the form, she received a call from a nurse who asked her more questions and set up a time for an evaluation. The evaluation is a day-long process, Rayburn said, where the doctors run a lot of lab work, take X-rays and do CAT scans on the person wanting to be a living donor. 

 “They want to make sure the living donors are not putting themselves at risk by doing this,” Rayburn said. 

Rayburn said she had a pretty good idea that it would work out, and soon found out that she was a match and compatible with Bourge.

After that, it was a relatively quick process.

“I was able to donate my kidney to her. The surgery was on Friday, I went home on Sunday, and in less than a week, I was driving again,” Rayburn said.

It turned out to be a successful transplant, Bourge said, and with Rayburn’s kidney, she finally began to get healthy again.

For Rayburn and Bourge, as stipulated by hospitals for all transplants, both medical processes stayed completely separate the whole time and weren’t discussed between them. Rayburn said it is helpful for people considering living donations to know that part of the process includes having a patient advocate.

“So at some point in the process if you’re saying, ‘I don’t really know if I want to do this’ and ‘I don’t know how to tell my friend I changed my mind,’ [a patient advocate] is the person who can help you do that,” Rayburn said. This way, she added, donors can have confidence there’s someone looking out for them as well.

After the transplant was done, both Bourge and Rayburn said they realized their main concerns were for each other. Rayburn was afraid that Bourge would reject her kidney, and Bourge was afraid a complication would arise from the surgery. 

Much to their relief, neither happened.

“It’s been an adjustment for her, I think probably way more than it has been for me,” Rayburn said. “For me, it’s like I never did it. I feel great, and I don’t have any restrictions.”

Except, she said, she isn’t allowed to take medications such as naproxen sodium or ibuprofen, as taking too much of those pain relievers can hurt the kidney she has left. 

However, she said, it’s worth it.

“I’m so thrilled that it worked,” Rayburn said.

Honoring a hero

In January 2018, Rayburn was sponsored by the Alabama Organ Center and UAB to participate in the Rose Parade in Pasadena, California, with Donate Life America, a nonprofit organization with the goal to increase the number of donations for needed transplants. 

Every New Year’s Day, the Donate Life Rose Parade float has brought living donors and recipients to ride or walk beside the float, while also honoring the families of deceased donors by showing loved one’s images on the float.

The theme for the 2018 float was “The Gift of Time,” Rayburn said, which is about how “there’s really no greater gift you can give a recipient than more time with their family and loved ones.” 

Rayburn said she got to meet all the other riders and walkers at a special dinner before the morning of the parade, and got to bring along her daughter as well as a friend for the trip.

“The crowd was real engaging, excited to see you, see the float, and we had people come up from the crowd and tell us that their family member was a transplant recipient, or their loved one was a donor,” Rayburn said, adding that it was a very emotional experience. 

“It helped my daughter kind of connect the dots because the donor families all wear buttons that have pictures of their loved ones. You see a lot of young people, and it helps you realize you got to be grateful for what you have. You never know where life is going to take you,” Rayburn said. 

Rayburn said that she encourages anyone thinking about donating a kidney to seek out more information, since there is no commitment in finding out more or asking questions. As of Feb. 5, 2018, the Alabama Organ Center states 2,350 patients in Alabama are on the waiting list for a kidney transplant. 

As a recipient of more time herself, Bourge said she also hopes others will consider donating.

 “I know Ann works so hard [at her job at UAB] to get people to donate to save people’s lives,” Bourge said. “And people do it for strangers all the time, more and more are doing it for strangers, donating kidneys or stem cells or whatever else. I think it is one of the most unselfish things I’ve ever seen.”

If someone is interested in being a living donor or a deceased donor, meaning donating organs after death, Rayburn suggests starting out looking at UAB’s website. 

To find out more about being a living donor, go to uabmedicine.org/patient-care/treatments/kidney-transplant.

Donation facts

► Regardless of age or medical history, anyone can sign up to be a donor and seek evaluation as to whether they are fit to donate from a transplant team. 

► Few conditions prevent a person from becoming a donor, other than HIV infection, active cancer or a systemic infection. Even with certain illnesses, people can donate.

► If you sign up to be a deceased donor, the fact that you are signed up does not make a difference to doctors when you are sick or injured and admitted to a hospital. Their priority is always to save your life.

► There is no cost to donate an organ. 

SOURCE: The U.S. Government Information on Organ Donation and Transplantation

CORRECTION: The text has been updated to reflect that Bourge's husband did not have a heart transplant.