Gloria James, 70, (she’s on the right in the photo with her friend Tenisha Franklin) is a successful Detroit businessperson, who has owned two local restaurants since 2020. In 1979, a health care provider told then 27-year-old Gloria, who is Black, that she had protein in her urine. “And then he didn’t tell me anything else,” she says. Over the next few years, her urine tests would show protein, sometimes blood. “The professionals are supposed to know what they’re doing,” she remembers thinking. “They will tell me if there was anything else I needed to do.” She had blood tests and a cystoscopy (a tiny tube with an attached camera is placed in the bladder to look around). Nothing was explained to her. No one mentioned kidney disease.
In 1992, when Gloria James was 40, she was diagnosed with type 2 diabetes, one of the most common causes of chronic kidney disease (CKD). During subsequent years, even at regular checkups, no one mentioned complications from diabetes, such as kidney disease. Gloria was not referred to a nephrologist (kidney doctor) to assess if her diabetes was causing any kidney damage. Even when her blood sugar became unstable, and an endocrinologist put her on insulin to manage her diabetes, no one mentioned her kidneys or kidney disease.
In 2016, at age 64, she became sick, nauseous, and always tired, showing classic symptoms of kidney disease. After reviewing her various test results, her cardiologist asked Gloria for the name of her nephrologist (kidney doctor). “I don’t have one,” she answered. “Do I need one?” His answer: “Yes, you do.”
She visited a nephrologist within days. The doctor explained that her kidneys were functioning well enough to not need dialysis immediately, and that he would help her get ready for when she did need dialysis. He referred her for surgery to create a graft (an artery and a vein joined together to provide access to a patient’s blood for dialysis) in one of her arms. In 2019, she started dialysis and a year later, her name was added to the kidney transplant waiting list. In 2020, Gloria received a kidney transplant.
Gloria wonders if her kidney disease may have been prevented, or at least delayed, if she had been told more about her diabetes and risk for kidney disease when she was younger. She hopes that by sharing her story, someone else may realize the importance of advocating for yourself and that access and equity in healthcare are crucial to the lives of those most at risk.
Gloria’s story does not end there. In 2022, she had a flare up of the BK virus. The BK virus is dormant and harmless in many people but can become active when the immune system is suppressed, as Gloria’s was because of her transplant. Her transplanted kidney failed and she went back on dialysis in March 2022, going to a center for a little over three hours, three days a week.
Fortunately for Gloria, she has her husband William, who is very supportive, even though he’s also busy caring for his 98-year-old mother. She also has two sons in their 40s who oversee the day-to-day operations of their Mom’s restaurants. “My two sons are the most supportive people that you could have,” says Gloria. “They are right there whenever I need them.”
Gloria also has a daughter-in-law who is a nurse and very involved with her care. She explains medical terms and helps Gloria with her many medications. Recently, as in the past, she accompanied Gloria to her medical evaluation for rejoining the transplant list. She was with Gloria during the first transplant and plans to be there for the second one.
Although she says that finding employees is a challenge, Gloria loves her colleagues and the work with her franchises. One colleague even offered to donate a kidney to her and went through the lengthy testing process. Even though he was not a match, his selfless act strengthened their friendship. She takes her work to the dialysis center where she says she gets a lot done. It was there that she befriended Tenisha Franklin, the dialysis center manager. In November 2022, the two women attended the NKFM Kidney Ball.
“When you are on dialysis, you need the right mindset. If you are all ‘woe is me’, it will always be a task to go there. It’s life support and it’s a job to me. Plus it helps to go to a center where you like the people,” says Gloria.
She praises the center for having a compassionate manager and dedicated staff.
Wanting to help others, Gloria is training to become a peer mentor at her dialysis center. “I didn’t have that. You don’t know what to expect when you go to dialysis. There were so many things I didn’t know.”
Gloria’s self–advocacy is hard won after years of knowing little about her diseases and their possible serious complications. “Transplant recipients are so excited to get a kidney that they don’t think of questions to ask,” Gloria explains. “I’m wiser and smarter this time around. I will ask questions.”
Recently, her nephrologist called her a superstar. We agree.