Shameka holds her grandmother’s hand as they enter the Emergency Room lobby. The 14-year-old’s face is puffed up and swollen, as are her ankles and legs. Lonie helps her granddaughter find a seat and goes to check in. Trips like this to the ER had increased in frequency over the last two years. Shameka had begun waking up with puffy eyes regularly, and on occasion her legs and ankles became dramatically swollen too. Her doctors had told her it was due to some sort of allergic reaction. An allergy to what? She did not know but her body was telling her something.
Waiting in the exam room, Shameka is entranced by the machines that surround her and fights the temptation to meddle with them. Lonie keeps a watchful eye on her inquisitive grandchild, who she knows has a precocious knack for dismantling and then reassembling household electronics—the television, space heater, and even her beloved Atari video game console. She has cared for Shameka since birth, during which her mother died of an amniotic embolism, and her father, Lonie’s son, left the infant with her. Nonetheless, now in her 90s, Lonie remains the stern guardian, imploring Shameka to mind her manners.
A couple hours later, the doctors and nurses are huddled among themselves reviewing Shameka’s tests and chart. They eventually explain the situation. Shameka’s kidneys are failing. Within minutes she is floating down the hallway on a stretcher, Lonie disappearing from sight at the far end of the hall. She’s airlifted by helicopter to a larger hospital, while the emergency technicians urge her to stay awake. If she falls asleep, they say, she might fall into a coma. Shameka’s heart pumps vigorously. She is going to get something called emergency dialysis. It is the first time she hears the word dialysis and has no idea what it entails.
Dialysis or renal replacement therapy has been the standard of care for people living with end-stage renal disease since the 1970s. Both types, peritoneal dialysis (PD) and hemodialysis (HD), cleanse the body of the naturally occurring toxins that normally get processed by functional kidneys. It is a notoriously time-consuming process and a reality that more and more are experiencing. “Kidney disease is affecting a lot more people than we know about,” says Shameka, now in her 40s. “I call it the silent, unpopular disease… We might know someone on dialysis, who has a transplant, or has kidney issues, but we don’t talk about it that much.” While most dialysis patients are over 50, the rate of renal disease in children has markedly risen in the past several years, raising the call to arms for many physicians and researchers to come up with alternative solutions.
However, none of this was explained to Shameka when she started dialysis in 1992. “I thought I just needed to do dialysis until I was cured,” she recalls. “Later, they told me that I would need dialysis for the rest of my life or until I got a kidney transplant.” For Shameka, this was easier said than done. She was referred to a center in Ocala, but due to her age, they told her, she had to attend a pediatric unit in Gainesville, 45 miles away. “It was horrible. I went three days a week (Monday, Wednesday, Friday). I left home at four a.m. for sessions starting at six.” The medical transportation companies were consistently unreliable, showing up late or sometimes not at all. Meanwhile, her school labeled her truant from absences, and she struggled to keep up with her studies. If she opted to skip dialysis, the hospital would notify the police, who would drive Shameka to the clinic for treatment (and were ironically more reliable).
To make matters more complicated, Shameka was also navigating the experience of motherhood, something that came her way unexpectedly as a teenager. She fought, both physically and mentally to stay healthy and provide for her son Edward. However, finding childcare was not easy, and often got in the way of attending her dialysis appointments. Some dialysis nurses were sympathetic toward Shameka and would take turns holding Edward during treatment, while others were not.
As a result of eventually missing too many treatments, Shameka was designated by her center as “noncompliant,” a label that would adversely affect her kidney health, patient stranding and ability to get on a transplant list. “I didn’t understand dialysis and the impact it would have on my life,” reflects Shameka. “It really wasn’t ever explained to me.” The dialysis center model did not take into account the other daily challenges Shameka faced. Feeling overwhelmed and under-informed, she vowed to educate herself and to become an active and empowered decision maker.
For Shameka and thousands of others living with renal disease, getting on the waiting list for a kidney donation is a necessary positive step in managing the chronic condition. But the odds are exceedingly bad. Of the over 90,000 people in the US currently on the waiting list, less than a quarter were able to receive a kidney last year. For this reason, Shameka wholeheartedly supports innovation in the transplant field, such as xenotransplantation. “If they can get an organ from an animal and they can get a chance to live their life instead of being stuck in a hospital, I’m all for it.”
Shameka waited five-and-a-half years to get a cadaveric kidney, enduring slews of evaluations. As she entered the transplant world, she had her first inclination to challenge preconceived notions about who she was and what treatment she deserved. “When I got my first transplant at 21, that’s when I started to discover my voice and advocate for myself,” she says. “I started to ask questions until I gained an understanding. That’s when I learned you can tell a doctor ‘no.’” Shameka started to take control of her own care and resolved to understand what would happen to her body. While this was not always received well by her physicians, it was necessary for her to fight the inequalities in health care to get where she is today.
While transplants certainly save lives, they are far from a permanent solution, and many complications can occur. Shameka’s luck was particularly bad, and her first kidney transplant only lasted one year due to the use of a faulty immunosuppressant drug, which led to a class-action lawsuit. Her body rejected the kidney, and she soon found herself sick and back at the dialysis center. “I remember the day,” she says. “July 4th, 2000. I was depressed. I felt like I had failed.” At 23 years old, she was the still youngest person at her clinic and for the next several years her life would continue to revolve around the treatment center as she weighed options to find a new kidney.
In 2005, Shameka received her second kidney transplant which would last 10 years. A full decade of freedom from the dialysis clinic gave Shameka time to attend university, work, marry, and expand her family, giving birth to Essence, her daughter. However, in 2015 her kidney started to show signs of disease. Doctors diagnosed her with a nephrotic syndrome caused by focal segmental glomerulosclerosis (FSGS), a disease in which scar tissue develops on the glomeruli, the parts of the kidneys that filter waste from the blood. It was only a matter of time until she would have to go back on dialysis again.
The next year would be a difficult one. Shameka moved to Jacksonville with her then husband and his family and started dialysis at a new clinic. En route to the center one day for treatment, her truck died on the highway. She didn’t have money to repair the vehicle, forcing her to commute two-and-a-half hours via bus to dialysis. This was followed by a misdemeanor charge that came with a community service requirement. Shameka explained to the judge that it would be difficult for her to complete her allotment due to her medical needs. The judge did not seem to care, and months later, she was forced to serve a short jail sentence. While in custody for 55 days, Shameka was brought to a dialysis center different from her own.
After release, it was extremely difficult to restart her care. “I learned that my dialysis center had discharged me,” she explains, “for missing 55 days of treatment.” She tried to reason with them, transfer to another dialysis center, or get a new referral, but was virtually stone-walled at every turn. Shameka’s only option was to go to the Emergency Room. If she was admitted, she would get treatment, and eventually a new referral. However, at the ER they determined that her kidneys still had residual function and was told she wasn’t sick enough to qualify for emergency care. She went home to wait for the coming onslaught.
Over the next few months Shameka got progressively sicker. “I was nauseous vomiting, weak, completely miserable. I felt like I was going to die,” she recalls. She returned to the ER and was admitted—her creatinine level now a whopping 12. She stayed in the hospital for a month, unable to return home, until a doctor issued a referral to a new dialysis center. It was then that the mother of two’s commitment to her own health, the health of her children, and her faith became her last resorts—the difference between giving up and surviving. Despite all the struggles in her life up to this point, Shameka persisted.
Fortunately, a breath of fresh air was right around the corner. One day a patient advocate came to visit her dialysis center bearing important information about the option of doing hemodialysis at home. The once-difficult therapy had been improved by leaps and bounds since it was first implemented in the 1960s. Shameka was taken by the idea and the potential freedom it promised. She acted immediately. It was not easy, but she secured access to home hemo following months of navigating healthcare bureaucracies and getting the runaround. For Shameka it was worth it. Finally able to get the machine, training, and authorization to begin treating at home became a literal lifesaver. “Honestly, I love it,” she relates. “I’ve been able to participate in life again. I don’t have to schedule my days around dialysis anymore.” Since late 2016, Shameka has done her own home hemo five days a week in sessions ranging from three to four hours. Having the flexibility to do the treatment whenever she wants has allowed her to work again as a technical support agent after years of surviving mostly from disability checks. Home hemo has been a gift that has lessened the burden of treating a chronic illness, as a Black woman who has fought systemic issues within the healthcare system to get the same care as others.
All the while, Shameka holds on to the hope that she will find another suitable kidney before too long. Due to her previous transplants, she has potentially developed antibodies that would cause a new kidney to be rejected, further complicating the search. Nonetheless, Shameka began the evaluation to get on the waiting list again this past winter, but when the COVID-19 pandemic hit, the process ground to a halt. “I think I’m going to have to start over again because it’s been so long,” she laments. However, she sees this as a temporary setback. “I’m still optimistic,” she says, “and I’m willing to jump through the flaming hoops to get a kidney transplant.”
Shameka furrows her brow as she helps Essence finish her homework. She glances at the clock and is surprised to see how late it is. Her eyes widen. “You gotta go,” she says. Essence quickly packs her bag and rushes out the door to catch the bus to school. Shameka waves to her affectionately and shuts the front door.
With the teenager gone, Shameka turns to her dialysis supplies, stacked neatly next to the stairs. Methodically she prepares, pulling supplies from various boxes—a dialyzer, dialysate solution, sterile gloves, alcohol, and syringes. She mounts the dialyzer canister and lines into her home hemodialysis machine, closes it, and turns it on. “It takes about 30 minutes to set up for treatment,” she explains. “I have to prime the machine first.” She hangs a bag of saline and it begins circulating through the lines to remove all the air bubbles. In the meantime, she takes her vitals and logs them on an iPad.
When the machine is ready, she sits down in a lazy-boy-style recliner and gets ready to cannulate. She sterilizes her arm thoroughly and then, with precision, inserts a needle into the fistula in her arm. She layers tape over the needle to secure it and with the push of a button, the machine begins to cycle. Shameka pulls out a book and reads as the machine cleans the toxins from her blood.
Taking control of her own treatment has been transformative. “I used to be introverted,” she says, “but I became extroverted when it came time to advocate.” Since starting home hemo, Shameka has become an ardent patient advocate. She volunteers as a kidney coach for the National Kidney Foundation (NKF), an ambassador for the American Association of Kidney Patients (AAKP), and a patient advocate for Fresenius/NxStage™ the makers of her home hemodialysis machine.
Supporting others living with kidney disease is one way that Shameka works to better the world—a world not designed to favor the needs of the chronically ill. However, from her trying experiences, she has crafted a sense of deep wisdom about managing her illness and overcoming obstacles when they arise, something she wants to share with those who will listen. “Now I have no problem talking to people about kidney failure because I’m still sitting in the same chair they are,” she says. “I can be the voice for people who have no voice or haven’t found their voice.” She imbues these ideals onto her children, so that no matter what health challenges they might face in the future, they understand how to speak up and advocate for themselves.