In her childhood, Dinishia Ferguson had aspirations of becoming a lawyer; today the 27-year-old said she honestly doesn’t feel like she will be alive to see her 40th birthday.
“I don’t have an idea what age I will be alive to see,” said Ferguson, who, since age 19, has been battling chronic kidney disease with the failure of one of her kidneys. “This is so frustrating.”
Ferguson was diagnosed with kidney failure in November 2013.
She sought medical attention at the urging of her late grandmother Eulamae Forbes, after she struggled to retain anything she ate or drank and losing over 20 pounds, unexplained.
“I had this very bad stomach pain like something was ‘eating’ my stomach,” she recalled. “My grammy told me I should go to the doctor. The first thing they told me was that one of my kidneys had failed. I was only 19, so to me, it was a blow because my daddy [Wilbert Ferguson] had died only a year earlier.”
Her dad, who died in 2012, had also battled kidney disease. Ferguson was diagnosed with kidney disease the year after his death. She was told she developed the disease because of her genetics. She is also her father’s only child.
Seeing what the disease did to him and how he suffered, she said she blocked what medical professionals were trying to tell her and told them she would not do dialysis.
“I was scared and very young, and [thinking about] the condition my daddy was in,” she recalled.
Her grandmother set her straight.
“Three days later, she [her grandmother] told me if I wanted to live, I would have to do it [dialysis]. At first, I cried, but I made up my mind to do it if I wanted to live,” she said.
Since the age of 19, Ferguson has been on dialysis. She said medical professionals have told her she will be on dialysis for the rest of her life – however long that may be.
She has dialysis treatments three times per week for four hours each session.
Dialysis is defined as a treatment that does some things that are done by healthy kidneys. Dialysis is needed when a person develops end stage kidney failure.
When a person’s kidneys fail, dialysis keeps their body in balance by removing waste, salt and extra water to prevent them from building up in the body; keeping a safe level of certain chemicals in the blood, such as potassium, sodium and bicarbonate; helping to control blood pressure.
In the eight years Ferguson has battled kidney disease, she’s gotten bone disease and has had a venous bypass to reroute blood flow around a blocked vein. She had a fistula in her arm.
Ferguson also has Steel syndrome, a rare genetic disease characterized by dislocated hips and radial heads, carpal coalition, scoliosis, short stature, and characteristic facial features, which she said meant she wasn’t getting proper blood flow to her heart.
“And now I’m having more issues because my arm is swollen, my right breast swollen, bad cramps, bad headaches.”
And she is unable to work because she admits she can’t stand on her feet for five minutes without severe pain, everywhere.
Painkillers, she said, don’t really work.
“I’ve been on multiple jobs and have to quit because I can’t stand up.”
She is also now being encouraged to remove her thyroid gland. Hypothyroidism is said to be highly prevalent in chronic kidney disease patients, including those receiving dialysis.
“So, my only option now is to remove my thyroid, so that’s another surgery that’s pending.”
She can’t work, and her dreams of becoming a lawyer are just that – dreams – but she said she is still trying to pursue higher education, studying information technology at a trade school. “It’s not all that physical stress on my body. I can sit down and deal with the internet,” she said.
Battling kidney disease has not been easy, Ferguson admits.
“This is very hard. This is like another part-time job.
“To be honest, every day I deal with depression because of dialysis. Your body feels weak, you always fatigued, no strength and dealing with a bone problem. I can barely walk or sit up.”
Ferguson said she’s taking her life one day at a time, especially with all the changes.
“The right side of my face is bigger than my left face. The bones on my chest are deformed and sticking out. My right arm is swollen … just taking it one day at a time.”
She credits her ex-boyfriend, Jeno-Jean Smith, with being her support system. She said he has been with her from the day she was diagnosed to today and takes her to her dialysis treatments.
Globally, the world recognized World Kidney Day on Thursday, March 11. This year highlighted the theme “Kidney Health for Everyone Everywhere – from Prevention to Detection and Equitable Access to Care”.
World Kidney Day, which started in 2006, is a global campaign aimed at raising awareness of the importance of the kidneys – awareness about preventive behaviors, awareness about risk factors, and awareness about how to live with a kidney disease.
Ferguson’s advice to anyone suffering with kidney disease and dialysis is to “put God first, pray and remain strong”.
Four years ago, chronic kidney disease was responsible for 1.2 million deaths and was the 12th leading cause of death worldwide, according to nephrologist Dr. Adrian Sawyer.
Dr. Sawyer said non-dialysis-dependent chronic kidney disease has been estimated to affect approximately 19.2 million adults in the United States, according to the National Health and Nutrition Examination Survey 2003.