By George Kevin Jordan, AFRO Staff Writer
Stephanie Dixon, was a mother of two children living and working in Manhattan in 2001. She had survived 911, but the stress of the event had taken its toll. There was a curfew in the city and she had to go through blockades to get to her own house. “It was utter chaos,” Dixon recalled.
Dixon said she wasn’t feeling well and a few months later found herself in the emergency room.
Stephanie Dixon, a mother of two living with kidney disease and advocate for the health community and educates about kidney failure. (Courtesy Photo)
“I wasn’t told I had kidney disease. I was told I needed dialysis,” Dixon said. “I didn’t think to ask, ‘what is dialysis?’”
“I was told if you don’t get it, you are going to die. All I heard was ‘you are going to die.’”
She recalled hearing the doctors but not quite understanding what they were saying to her at the time, a condition she now recognized as dialysis fog.
She said she remembered the fear she had in asking her teen daughter at the time to listen to the doctors and interpret what they were saying to her and tell her what to do.
“I turned my life over to my child,” Dixon said.
Since then Dixon has been on dialysis for over 17 years. She is an active voice in New York, where she lives, and she talks to people on a regular basis about kidney failure. But her story is one of many people who face kidney disease everyday.
This month the AFRO has been reporting on how African-Americans are disproportionately impacted by Kidney Failure. The American Kidney Fund (AKF) recently released a fact sheet with alarming data.
About 37 million people currently have kidney disease and about 20 million more are at risk of developing it. It’s the ninth leading cause of death. And while African-Americans only represent about 13 percent of the population, they account for more than 35 percent of Americans with kidney failure. In fact, African-Americans are 3 times as likely to develop kidney failure than Caucasians, according to the AKF.
And D.C. in particular is more vulnerable than any other city in the U.S. as the AFRO reported.
AKF’s president and CEO, LaVarne A. Burton said in a statement: “The District of Columbia has the highest percentage of residents with kidney failure in the country, creating an enormous public health challenge and placing a very serious physical and financial burden on those living with the disease. The nation’s capital is a perfect storm of risk factors for kidney disease. Neighborhoods with soaring rates of diabetes and high blood pressure, the leading causes of kidney failure, are predominantly minority. Minorities, in turn, are at higher risk for kidney disease and kidney failure.”
As a continuation of National Kidney Month, the AFRO spoke to kidney failure survivors about their journeys.
Melissa Baker, a mother of an adopted 6-year-old son living with kidney disease, hopes that other people living with kidney failure educate themselves in order to properly advocate for themselves with health practitioners. (Courtesy Photo)
Melissia Baker, 47, of Philadelphia was diagnosed with type 1 diabetes at age 10. But it wasn’t until her last 30s that she faced kidney failure.
Even though she had undergone one transplant operation her optimism showed even through her phone conversation with a reporter. During her transplant, Baker said, “I only waited nine months for a transplant which was really quick.” She received a kidney and a pancreas from a donor. She had those two organs for six years before she went to pancreatic kidney failure again, and she had to start dialysis.
Baker started hemodialysis, at a center. After treatment she found herself exhausted and was down for the remainder of the day. “My days were shot. It was a really rough time,” Baker admitted. Her schedule meant she went to dialysis for three days and then endured long recovery times.
“By the time you felt better it was time to go again,” Baker said. “My life was consumed with just going to dialysis.
Then she started peritoneal dialysis which was at home. However, with this process you did it everyday. And there were other considerations as well. “I found it to be really isolating because your not around your kidney community anymore. Everything is on you.”
“So if I found my kidney machine had gone off which it does for various reasons you have to troubleshoot it yourself. And sometimes you have to make phone calls yourself.”
Baker said the process also accumulated a lot of waste and boxes from treatment shipments. Her travel was limited.
“It made me feel like my life was consumed with dialysis,” Baker said.
Around that time Baker discovered a nocturnal dialysis center. “It was just so much better for me,” Baker said. “It’s the best of a difficult situation.” She goes three nights a week for 8 and a half hours per treatment, from 7 p.m. until 4:15 a.m. then she goes home and rests, and then gets started with her day at about 10 a.m.
Baker said since starting dialysis she hasn’t been able to work because the treatment leaves her so fatigued, along with anemia and navigating many doctor’s visits. Luckily she has a strong community- her parents, siblings and doctors- to provide support, encouragement and information. However, it’s her six and a half year-old adopted son who brings Baker her biggest gift – hope.
“We work well together, he needs me and I need him,” Baker said. “He keeps me going and keeps me pushing forward and gives me a reason to be motivated. He gives me a reason to press on.”
Looking back on her journey, Baker had some advice for people who may be facing similar health challenges.
“As an African American, when you are going to the doctor, unfortunately I still think there is some unconscious bias that a lot of physicians don’t think you know what you are talking about,” Baker said. “But it is our responsibility to educate ourselves on our healthcare and what chronic or health care conditions we may be facing, so you know your body, your symptoms and the treatment choices before you go to the doctor.”
David White, who has kidney disease, has turned his health around by working out, eating healthier, no longer smoking and serving as an advocate for himself and others suffering with kidney failure. (Courtesy Photo)
David White, 57, of Temple Hill, MD. learned the hard way the results of ignoring your body and your healthcare professionals. In October of 2009 he found out he had kidney failure. His wife had insisted that he go get himself checked out as she knew something was wrong, saying. “I was still pretty much in denial,” about his health.
But White knew his health had been declining, saying, “I had a laundry list of poor health habits for many years including, smoking cigarettes, drinking too much alcohol, not eating right, eating too much of the wrong food.” White said at one point he weighed over 300 pounds.
He had started exercising for a while to improve his life, but had gotten tired of it and didn’t know why. White said he continued to lose the weight however and thought, “If it ain’t broke don’t fix it.”
He dropped down all the way to 200 pounds. But at 190 he did admit to feeling something might be wrong. His wife dragged him to George Washington University Hospital’s emergency room. White recalled that day.
“The emergency rooms had two flights of stairs,” he said. “I made it up the first flight under my own power. I couldn’t make it up the second flight of stairs.” After running some blood tests he found out his kidneys had stopped working and he was “Beyond stage five which is the worst of the five stages of kidney disease.”
He started dialysis immediately and was in the hospital for three weeks, but said, “I was completely not ready for what was happening. I was still in denial and shock and angry and didn’t know how to process things. I didn’t think I needed a machine to keep me alive.”
For the first six months he was stubborn about treatment. It wasn’t until his first care meeting, a discussion on how to continue health treatment, that things got real.
“My first care plan meeting was a special one, it was really an intervention,” White said.
“The last thing they said was, ‘if you don’t start going to dialysis three times a week you’re not going to be around much longer.’ Those words took hold that evening.”
White said he was able to get the assistance he needed from SSDI to help financially pay for treatment, even a Metro pass to be able to get to dialysis treatments. He decided to make some positive changes.
He quit smoking on New Year’s Eve of 2010. He then began exercising again. At the start he couldn’t do a single push up. Slowly he worked his way up completing over 15,264 push-ups, and by August 29, 2017 White said he had completed 100,000 push-ups.
Since his diagnosis he has become a vocal advocate for other people dealing with kidney failure. He joined a PAC, a patient advisory committee, and learned how to help others through this process. He is now a fulltime advocate, and hoping to go back to work fulltime, and lean into entrepreneurship.
White also had advice for people with questions about kidney failure.
“First step is get a check-up” White said. “For some people in our community going to the doctor is a sign of weakness. The second hurdle is get your kidney tested.”