Reflecting on the Need For Kidney Donations: Waiting for Life
Dr. Fabu Carter (l-r) and LaTisha McDuffy are waiting for kidney donations while Antwon Clipps is gratefully carrying on with life with his second kidney donation
Part 1 of 2
By Jonathan Gramling
It’s not something that is always talked about, at least not in the open. After all, who wants the world to know that three days per week or more they are hooked up to a machine for up to six hours as their blood is purified through dialysis. And like all other indicators of ill-health, African Americans are inordinately impacted by kidney disease and failure.
“Black or African Americans are more than 3 times as likely and Hispanics or Latinos are 1.3 times more likely to have kidney failure compared to White Americans,” says the National Institutes of Health. “Minority populations have much higher rates of high blood pressure, diabetes, obesity and heart disease, all of which increase the risk for kidney disease. Access to healthcare may also play a role.”
And while dialysis is a certainty in the routines of people with kidney failure, receiving a kidney transplant is not. People can wait for up to 10 years or more for a transplant. They are waiting for life.
During National Kidney Month, The Capital City Hues will tell the stories of three African Americans — Dr. Fabu Carter, LaTisha McDuffy and Antwon Cripps — who have experienced kidney failure with two of them still waiting for a kidney donation while the third has somewhat resumed a normal life after the transplant.
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LaTisha McDuffy has lived with kidney failure for most of her life.
“My kidneys started failing at the age of 15,” McDuffy said. “And I started dialysis at 18-years-old. Then I got a transplant at 19-years-old, but the kidney lasted for only one year. And then I went back on dialysis for five years. And then I got a transplant in 2003. I had that kidney for 11 years. And then around 2012-2013, that kidney failed after 11 years. That was a little heartbreaking.
“I was so young the first time around and so I didn’t understand the gist of it. But at 23, I knew way more than I knew at 18. And having that freedom for 11 years, I never thought that I would ever come back here to dialysis. That was a very hard process to me. It was almost like I literally had to grieve the loss of the kidney because I couldn’t bring myself to come back here. I would pray and pray and the doctors would say, ‘We’ll leave it up to you when your body tells you that you are ready.’ In my mind, I was never ready to come back here. And so, I was laying in the bed and praying. I was like, ‘Lord, I don’t have the strength to say that I am ready myself. Can you please just make it very clear?’ And oh, He made it very clear. I called and they said, ‘Don’t come here. Go straight to the ER.’ They usually start people on dialysis when their kidney function is at 10 percent. Mine was at seven percent. They said, ‘You must have some guardian angels over you because people don’t make it with a seven percent kidney function. People usually die.’ I was like, ‘Oh boy!’ I started dialysis through the hospital.”
McDuffy has been waiting for a kidney transplant for the last 8-9 years. And being on dialysis has radically changed her life.
“I had a home daycare for 11 years before I went on dialysis,” McDuffy said. “It was thriving. When I started back on dialysis, I tried to keep the daycare open. But your energy level just goes completely down. I tried to do it for about a year. And I just had to let it go. That was one of the hardest things I had to do. I felt like I was letting go my purpose. Then I felt like I didn’t have a purpose. My life consisted of dialysis. I was really depressed for the first couple of years. And then one day a friend of mine said, ‘Remember those cookies we had in Chicago? We should try to make them.’ She made her batch and I made them. Mine came out really good. And I kept perfecting the recipe. Now it’s just like a household name. Everyone knows Mo Betta Butter Cookies. I feel that God gave me another purpose. He let me know that I still have a purpose to be here because I really didn’t feel that. I just felt like my life consisted of dialysis and home to rest and then it was time to go back for dialysis. So now my cookies, my business, is like a ray of sunshine and hope for me. That keeps me going. And that keeps my mind off of how long I’ve been waiting on a kidney this go around.”
While living with a transplanted organ isn’t a walk in the park, it is like night and day in terms of the improvement in one’s quality of life.
“Transplants have their forms of difficulties with all of the medications and side effects, but you have a lot more freedom. I didn’t mind taking all of the pills and adjusting to all of the medications. Obviously I did it for 11 years. This has been my hardest battle just with the second go around with dialysis. They say that the average person goes on dialysis for five years. Well I’m going into 10 years now and I’m still here.”
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Fabu Carter, Ph.D., is Madison’s first Black poet laureate and currently works for the WI Alzheimer’s Disease Research Center. Carter is well aware of the history of African Americans and their treatment by the nation’s health system. And as an embowered Black woman, Carter wanted to stay in control of her body and have the least intrusive treatment in 1999 when she was diagnosed with diabetes and was put on a medication that quite possibly would have an adverse impact on her kidneys.
“They would monitor me throughout the years to monitor my kidney health,” Carter said. “They also told me that if I were to lose weight, for many people, it would slow down the disease. Actually that first year, I lost 20 pounds. And I came off the medication. Well I gained the 20 pounds back. And then I had to go back on the medication. And then after a couple of years of being on the medication, I was told it had started to impair my kidneys. They were just going to monitor them carefully. I was sent to a nephrologist, a kidney specialist. And so I continued for a number of years”
And then it hit as Carter prepared to return to Kenya, Africa to begin the process of earning her Ph.D.
“I noticed that my legs were swelling,” Carter said. “My legs were very puffy. And it had never happened before. Here I was getting ready to go on this international trip. I looked at my legs and they were swollen. When that happened, that was a sign that my kidneys were actually doing very, very badly. When I came back from the trip, it was the first time that the nephrologist said I needed to go on dialysis and get on the transplant list. It just seemed to me that he was moving too fast and he wasn’t giving me any options to reverse the kidney damage or change my diet.”
Next issue: The road to dialysis