*Johnny has been right beside Barbara for every doctor’s appointment, test, surgery, and more. (Photo by Sara Rothwell)*

*Barbara with some members of her transplant team: Dr. Sharma, nephrologist; Dr. Lyle J Burdine, surgeon; and Dr. Joe, intern.*

*A fun group, Barbara enjoys being involved with the Sandflat Seniors and their activities.(Photo by Sara Rothwell)*

June 19, 2020, is Barbara Pitts Riley’s Dialysis Emancipation Proclamation Day. That’s the day she received her kidney transplant, after four years of dialysis and 22 years of renal failure. That’s the day she underwent surgery at UAMS in Little Rock, Arkansas.

“On June 18, 2020, on Bingo Thursday at 11 a.m. I got ‘the call,’” Barbara said. “I was at the Sandflat Center with the seniors. They were playing Bingo, and I could hardly wait for one of them to Bingo. I ran to the room and said ‘BINGOOOO! I got a kidney!’ They were ecstatic. I was happy, but not ecstatic, because I knew the possibilities of it not being a perfect match. Regardless, I went to the hospital in good faith with great expectations.

“Surgery started at 11 p.m., and by 1:30 a.m., my husband received a call saying the kidney had been grafted, and it started working immediately. I woke up about 5:30 a.m. I was sitting up in the chair by 9:30 a.m., and they had me walking by 5 p.m. on Friday evening. On Monday, I was released to come home, only to return on Wednesday,” she said.

Barbara’s transplant journey actually started in 1998, although at the time she did not recognize it immediately. “Shortly after my grandfather passed away, I had chronic pain,” Barbara said. “I was focused on taking care of my grandparents, who had taken care of me most of my life, and I wasn’t really paying attention to what was really going on with my body. I managed my pain with prescription and over-the-counter anti-inflammatory drugs, but the red flag, ultimately, was increased protein levels on my annual checkup exams.”

Initially, the doctors thought Barbara had Lupus or some other autoimmune disease, but early on she was admitted into the UAMS renal clinic and was able to receive intervention treatments. She managed to avoid dialysis for 18 years. “A good team of doctors, diet, exercise, managing my blood pressure, and prayer is what it took,” Barbara said. “I knew eventually I would have to go on dialysis to maintain a quality of life, but I decided early on that I would do it at home.”

Barbara started in-home peritoneal dialysis in 2016 when her kidney function was at 5%. “I believed that eventually I would receive a transplant,” she said, “and I never gave up. In my weakest moments, I would always remind myself it could be ‘any day now.’ I saw others around me and all over the world dealing with chronic kidney disease. There were good moments, and not so good moments. In 2017, I had to have my right kidney removed because of two tumors detected in an ultrasound, and then I was delayed two years from the transplant list to ensure no other tumors developed.”

Barbara underwent many appointments, exams, tests and kept the faith all along. In 2019, her urologic oncologist cleared her to begin working on getting back on the transplant list.

“My nephrologist always kept me on edge to maintain the best health I could,” she recalls. “There are so many chemical levels that could cause heart damage, liver damage, pancreatic damage, just to name a few, so my goal was to maintain my health as best as I possibly could until I got the call I was waiting for.”

Barbara said she made several posts on Facebook asking for donors and had several people interested in being tested. She said she still does not know much about the donor who gave her life. “All I know is that the kidney came from Florida,” she said. “I do not know if it was a living or deceased donor yet.”

*Barbara’s nephrologist used this photo of her for a Chronic Kidney Disease Research group because she admired the way Barbara took care of her skin and hair.*

Now that Barbara is 120 days post-transplant, she says the hardest part about the actual transplant was constant trips back and forth to Little Rock, but all of her health issues have presented many trials over the past 20-something years. “The biggest challenge throughout the whole journey was having two parathyroid surgeries, five near-death experiences in 2019, and eventually I wasn’t able to recognize myself as the person I once was,” she said. “I had to accept a slower pace of life, wasn’t able to multitask as many tasks, and it seemed like I was getting slower and slower. My husband and my mom, Eula Piper, were my caregivers throughout the whole thing.”

After the surgery, she says the first several weeks of recovery were intense. Her husband, Johnny Riley Jr., was there with her every step of the way. “He was there beside me for every doctor’s appointment, test, surgery, and more. We drove 2,600 miles between here and Little Rock in the first month alone,” she said, “but now I’m happy to say that I only have to do labs twice a month, and all my visits are telemedicine. I’m doing well!

*The toughest part of Barbara’s journey was her parathyroid and calcium issues. Her first parathyroid surgery took place in December 2017.*

“My life now is busy, busy, and I’m pressing my way through,” she said. “There are a few aches and pains, but the more I move, the easier it becomes. There are some side effects to some of the medications I take. There are anti-rejection medicines, meds to prevent infection, some to keep ulcers from developing, and many more. Initially, I was taking about 36 different pills a day, but now I’m down to 22, and expect that to decrease even further as I recover. I’m looking forward to returning to golf, tennis, bowling, and dancing again.”

Now that she is feeling better, Barbara can focus on her community once again. “All my time is pretty much committed to a 15-hour day of staying healthy, being a pastor’s wife, working with missions and youth at church, and keeping the seniors at Sandflat Center healthy, happy and creative,” she said. “I am involved in many community activities such as neighborhood cleanups, food drives, voter registrations, gathering statistics for national research projects, volunteering at homeless events, and I’m a member of Alpha Kappa Alpha Sorority Kappa Xi Omega Chapter of Texarkana.”

Barbara is a native Texan, who grew up in the small town of Summerfield, Louisiana, in Claiborne Parish where she was the valedictorian of her graduating class, and moved to Texarkana in 1982. She is married to Johnny Riley Jr., and they have a blended family of two sons, one daughter, and four grandchildren.

Barbara leaves others with a message of gratitude, hope, and encouragement: “I would like to say ‘thank you’ to my donor. Your donation to save my life is greatly appreciated. This journey is really a serious one, and it is hard.”

To others going through a similar health issue, Barbara says, “Be careful about the medications you take. Don’t take your high blood pressure or diabetes for granted, try to manage them as best you can, and above all, avoid anything that’s unhealthy or brings negative vibes.”

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